Story written 2011

Faith was born blind and severely epileptic. She had brain surgery when she was one to remove the focal point of the brain where the neurologists felt the epilepsy was originating from. Sadly they couldn’t remove it as it was on both left and right hemispheres of the brain.

Faith was able to sit but as her epilepsy worsened she is now totally immobile and in a wheelchair. Her bones are fragile and crumbling and she is due to have a big hip operation in September 2011 as her femur is not formed properly and her hip ball and socket joint is malformed.

Faith has a pulse generator in her chest with electrical currents constantly pulsating through a copper coil wrapped around her vagus nerve to try and control some of the seizures. Faith is highly medicated and is in a body brace and is fed by gastrostomy. She is non-verbal and her comprehension is limited.

However, Faith is our beautiful angel. She is accepting and sweet. She listens to voices and her eyes sparkle when she is content. She loves cuddles, being sung to and having her hands and feet massaged.

Update 31st of July 2023

Faith has just come home after a week in intensive care.

Update 30th October 2022

Faith still loving facials and foot massages. She has recently enjoyed moisturizing foot socks that you leave on for 20 minutes then massage her feet! Bliss for her. Such a sensory experience. 

Faith loves outside daily walks in her chair and gentle chest physio stretches to help her breathing. Loves Halloween and the whole build up to Christmas. The music. Decorations. Everything!  

Update 30th October 2021

Faith is doing well. Always her epilepsy is an issue however this does not stop her from doing things. Even though it can wipe her out for hours.

She is thoroughly enjoying wheelchair yoga the hydrotherapy pool, bath bombs which she loves, loads of facial massages face masks foot masks – one big spa day. She is certainly the princess of Spa!

She is currently busy making Halloween decorations for her room. Any sensation for her hands and feet she enjoys. 

Update 26th March 2021

Faith has been shielding and will continue to do so until the end of March, when she will then be able to go into her class of 6. It is all very exciting! She has thoroughly enjoyed her song time and story time through school zooming and loving her foot massages and bath bombs, what more can a girl want!

Update 6th February 2021

Faith is still self isolating. Enjoying lots of sensory stimulation, such as foot spa, bath bombs, hand massages and enjoying the different voices on audio books. She has had her first vaccine, thank goodness, but she suffered for 3 days after. ☹️ Faith has a new cpap mask as the old design was cutting into her nose.We are all pleased with it😊. Anything to help 💤 sleep. Mae is studying hard on-line schooling and cooking lots in the kitchen and making a load of mess to go with it!. Thank you everyone.

Update 21st August 2020

Faith is doing very well at the moment. Faith recently had her front tooth come out luckily the one behind it has filled the gap! She certainly suffered sore gums, but feels good now. 

Update 2nd September 2019

Mae had good GCSE results and is going to be in the sixth form studying A levels. Faith has thoroughly enjoyed being in the shade in the garden on sunny days.

Update 10th August 2019

Thank you to Claudia Meyer for being such a regular Post Pal to Faith and Mae. Lorayne your last post was epic! And your writing so beautiful. Thanks always to Debra and your super monthly boxes. Faith and Mae love them! And to all the post cards/cards from around the world!!!!!!!

Faith has been doing lots of pampering lately. Face masks, nails, exfoliation. You name it, she has been pampering! Mae dip dyed her hair red for the summer as school is out. Been baking and joining in with Faith pampering herself too and camping in the garden with friends.

Update 21st March 2019

Faith went through a blip of horrid seizures, but the last week she has been under better control. She is loving being on the peanut ball – it is freedom from being in the wheelchair! Thank you to everyone for their special cards and gifts. Xxx

Mae is busy revising for  GCSE’s it is such a tough time and she is exhausted.

Update 10th February 2019

Faith’s really enjoyed Chinese New Year at school – smelling five spices, ginger and everything sensory! And has a new Cpap mask that doesn’t rub her face any more when she is wearing it at night, which is great as she sleeps longer. Mae studying for her mock GCSE’s and then the real ones. Not easy. She burns incense while studying. The house smells amazing !

Thank you to everyone who has sent wonderful cards and gifts. Debra, Claudia, Loraine …… You’re all so wonderful, making us all very happy and so excited to get the post x

Update 2nd November 2018

Faith is still struggling with  hip pain. X-rays don’t show any stress fracture which is a relief! The consultant suggested a new moulded chair should help. Thank you for all the amazing cards and kind words and gifts for Faith and Mae. They are so appreciated

Update 10th September 2018

Faith has been enjoying the sea air a lot recently, as we have been visiting the beach a lot. Nothing like fresh air to blow the cobwebs out! Faith has been admitted to hospital because of a chest infection but she is out now. She is struggling with hip pain too. So the OT and physios are working with Faith.  She will be 17 in September, so a massive achievement. What an amazing person she is.

Mae has another hamster to replace her old hamster. It’s a boy! Haven’t had boy hamsters before. An animal is a great way to help her relax. Mae has been baking and making her favourite stir fry.  They’re both now back at school.

Update 26th February 2018

Well Faith is putting on weight, which is good, but her seizures are so unpredictable still, which gives her headaches. Her skin is so sensitive at the minute and fragile, so we have to use gentle creams and bath creams on her, but she is as lovely as ever!

Update 16th October 2017

Faith had a great birthday, 16! Cannot believe it!  Thank you for all the great birthday cards from all around the world! Faith has been enjoying the sensation of  baking chocolate brownies with her sister Mae. The smell of chocolate. Yum! Faith and Mae have been enjoying  foot spas and foot creams together.  Messy but super fun!

Update 24th August 2017

Faith has had a busy summer going to the zoo, shopping, bowling ,baking and in the garden!   Thank you so much 😊 for all the cards from England and around the world

Update 17th November 2016

Faith’s seizures are more frequent and we are keeping her away from anyone with any sign of a cold. Let’s just get through the winter!

Also a thank you to Celia B, Kaiso Gee, Claudia, Bev and everyone who sent a wonderful card/letter to Faith. Soo amazing you all are. Please can people leave their emails so we can thank them. x

Update 2nd October 2016

Faith has a cold and sneezing. We are nurturing her to make sure it is only a cold.
Mae is getting super excited about Halloween. Hmmmm. Spooky. Faith loves to dress up as a witch and scare anyone who comes trick or treating at the door.

Update 6th September 2016

Faith is almost 15. We cannot believe it! How wonderful this is. What a difficult year it has been and we are so excited to see her reach 15.

Thank you to everyone sending postcards, letters and gifts. So special, thoughtful and kind. We all really appreciate it and can’t wait for our postman to come everyday. It helps us get through everything.

Update 8th August 2016

Thank you Bev Higgins, Claudia Meyer, Hazel and Steve and all the super people who send incredible cards and best wishes! Faith and Mae think you are awesome.

Update 7th July 2016

Faith is putting on weight which is fantastic. Always trying to help her control her breathing – especially at night – and back pain. Nothing like a massage to relax her.

Update 2nd April 2016

Update 5th March 2016

Just wanted to add in a massive thank you to Mr Moore for Mae’s fabulous books! Faith is gradually phasing in school starting with 2 hours on Friday!

Update 3rd March 2016

Faith is doing well considering what she has been through. Her breathing is so difficult and the respiratory consultants are working on a plan for a bipap cpap and nasal oxygen, as she is thoroughly exhausted just breathing!.

Mae is enjoying baking, she made strawberry muffins recently and she ate them all before we got a look in! She also loves all 5 of her hamsters! Thank you for all the wonderful cards and letters of support. Please can everyone put their email address on their parcels so we can thank them!

Update 7th February 2016

Last Saturday they moved Faith onto a portable ventilator, 3 PICU nurses and a consultant wheeled Faith in a hospital bed outdoors and along to Big Ben. Faith’s family cut a cake decorated by Mae and toasted Faith as Big Ben chimed, before returning to PICU. They surrounded Faith with pink heart balloons, handmade heart confetti and said their goodbyes. Faith was taken off the ventilator and was expected to have between a few hours and a day.

Faith has now been off the vent for 8 days and is still fighting on. She has been moved out of PICU and to a palliative care bed. The doctors said if she survives this weekend then they will discuss discharging her to the school, where she normally boards weekdays.

Faith is by no means better, she is struggling to breathe, is in seizure activity 85% of the time and only occasionally opens her eyes. They  have now stopped doing any monitoring or interventions. The boarding school (which has highly trained nurses at all times) would be a better environment for her to spend her final time, however long that might be, and its closer to home for her family.

Update 26th January 2016

Faith has now been in hospital for a month and it’s become clear that her little lungs have given up. It has been decided that her quality of life has deteriorated in the past year. On Saturday Faith is going to be taken off the ventilator, given relaxing medication and let her slip away peacefully with her family around her.

Update 11th January 2016

Faith was admitted to hospital on Boxing Day with a chest infection. Her airways kept collapsing and she had to be moved to PICU and put on a ventilator. Faith remains incredibly unwell, although she opened her eyes briefly today.

Update 3rd January 2016

Faith was admitted to hospital on Boxing Day and then again 2 days after, we are still here as Faith is suffering with a chest infection. Faith is on steroids and IV antibiotics for her poor chest. We will need overnight stays to do testing again, as her consultant really wants to review her, because her airways are collapsing. Thank you to everyone who sent lovely cards and messages, they really cheered Faith and all of us up. Faith has thoroughly enjoyed the lip balms as her mouth/ lips dry easily and the oxygen dries them even quicker.

Mae loved the gifts for her hamsters and cheeky puppy Rosy.  Thank you.

Update 4th December 2015

Both girls thoroughly enjoying playing with Rosy our new puppy. Rosy loves sitting curled up on Faith’s lap and it keeps Faith warm too!

Update 2nd November 2015

Faith now needs to be nebulised twice a day and needs constant suctioning as her lungs are not functioning very well. She still puts a brave face on everyday, even though she struggles to breathe.

Update 4th August 2015

A massive thanks to Skye from Australia this month for the vegimite chocolate! Spectacular! It was yummy and is all gone. Hopefully she received our thank you emails and her animated cards too.

Faith has been amazing this week considering she has just been in hospital for over a week with her uncontrollable seizures and then chest infection.

I hope everyone is having a good summer.

Update 4th July 2015

Faith went in to hospital for a jejunostomy (stomach tube) and more bisphosphonate infusions (3 times 5 hour ones) for her osteoporosis. It is difficult for her as she suffers with general anaesthetics and gets a fever with the infusions, so we all hope she feels more comfortable very soon.

Thank you for Faith’s lovely paper cut gift through Post Pals. We had a fabulous time at the annual party last weekend too!

Update 31st May 2015

Faith continues to smile, so we are really delighted and trying to take photos all the time to catch them. Faith is thoroughly enjoying her baths and painting her nails. Soooooo girly. Mae helps too and is a great sister looking out for Faith and when she needs suctioning, she helps do it too! Faith still needs loads of suctioning all through the day and night. It keeps us very busy, especially the 2 washing machines which do at least 4 loads each a day!

Mae went on a day trip to France with school up to a light house, ate lots of chocolate, then came home again! I think she practised her French. Both girls are enjoying baking cakes (anything with chocolate) and making smoothies. They are also addicted to Britain’s Got Talent and we are all enjoying watching it together.

Thank you to Claudia for your updates on cute little Ella! She is soooo gorgeous. A massive thank you to Skye in Australia for the slide cards you sent with the animal sounds. So clever and a brilliant gift. Thank you everyone for being so lovely, kind and positive.

Post Pals is a fantastic part of our life and we all feel happier for being a part of it. We really do feel lucky.

Update 1st May 2015

Faith is still smiling and we have had three chuckles now! This is the best thing ever! They are quiet chuckles, but it still counts and we are all thrilled and so happy for her.

Faith made meringues at school and played with some Angel Delight again (strawberry is her favourite smell). Last weekend she had her toe nails painted all colours of the rainbow and her hair plaited and sparkly clips put in. She looked a fabulous teenager. Although I would say that as I am her mum!

Faith is due to have an operation in July on her stomach. We are waiting for more details. Five days in hospital. No one is looking forward to it, especially Faith.

Mae is all examed out. She said she needed lots of chocolate to help her revise. Any excuse! She had her hair coloured pink at the end – a lovely kind Post Pal sent a box of sachets to dip and dye your hair. We did accidentally get it over Mae’s clothes – but it all came out in the wash.

Faith got a lovely nail varnish  from a Post Pal this month, thank you. Thanks also go to Ligang from China for the owl necklace and to Baoshiji  from Shenzhen China for the owl purse.

Update 13th April 2015

Now she is a teenager, Faith is really into having her hair done, accessorising with bows, clips and plaits. She loves having her nails painted – rainbow toe nails are in at the moment! We eventually got around to buying a tangle tamer. They are the best! No more bed hair in the morning. Faith is smiling, especially when the bubbles (spa bit of her bath) is switched on. We have been busily taking photos of these absolutely magical and golden moments.

Mae is busy growing taller! She is really into unicorns and now back into My Little Pony series. I always say, you are never to old to watch 4 hours of My Little Pony on tv! I have to stop her otherwise she would get square eyes. Mae enjoys chasing the chickens around the garden and helping collect their eggs. We love eating boiled eggs!

Update 4th April 2015

Faith has been using the suction machine a lot recently, but wonderfully this hasn’t stopped her smiling. Faith has been smiling the past 4 months now (a big gap before then of 8 years when we had the last proper smiles) and last night Faith actually giggled. We almost caught it on camera. A wonderful golden moment for Keith and I. Mae was asleep in bed at the time.

We are all making chocolates at the moment – melting chocolate so the house will smell great over the Easter Weekend.

A big thank you to Caitlin in Shropshire for the wonderful CDs you send, the soft cuddly dog and audio story book. Faith loves holding the dog in her hand and we have all listened to the audio story book and CDs many times. Thank you Caitlin! Thank you Marioh Erdelkalup from Germany!! I hope we have spelt your name correctly. Thank you to Claudia, Jens and Ella, for your Easter gifts! Thank you Post Pals from Faith and Mae for the Easter card and yummy Easter Egg.

Update 3rd March 2015

Faith has just about got over her pneumonia. We’re still suctioning a lot but really improved. Faith is just starting to get some fresh air – wrapping up well and getting the sun spot in the garden! She loves listening to the birds and especially our chickens clucking (and Mae chatting of course).

Thanks Becky Butler for the super book. Mae ripped open the package and has had her head stuck in the book all evening. Hiya lovely Claudia Meyer. Ella looks soooo lovely and growing up beautifully. Mae loved the owl cut out. She (the owl that is) is sitting happily on our window ledge. Thank you from Faith for all the caring and colourful letters and lovely messages. She loves having them read out to her from all over the country and world. Thank you to Caroline for the rucksack, hair bands, cool pack and book too.

Update 26th January 2015

Faith was due to have Biphosphonate infusions at the Evelina for her osteoporosis but we had to cancel them as she was ambulanced to hospital with unmanageable siesures and put on iv epilepsy drugs, as her ones and other emergency drugs administered at home weren’t getting her out of her seizuring.

By chance they did a chest x-ray and found she has another chest infection, so it’s iv antibiotics. Poor Faith, she is really going through it, especially as her veins constantly collapse and so it was a miracle they managed to get a line in.

Faith has just come home and is on a course of strong antibiotics through her peg. She’s sleepy but on the right track.

Mae and the hamsters are glad to have Faith back as Mae gets very stressed seeing Faith unwell. Keith’s ‘man cough’ is also recovering and all is hopefully settling down now.

Thank you to everyone for their hamster cards, lovely messages and postcards. Thank you Claudia and Becky Butler (please can we have your email). You really make our family life better through your kind thoughts and cheerful messages. Thank you again.

Update 11th January 2015

Faith going into hospital for 4 days for iv biphosphonates as she is severely osteoporotic and hopefully this course will help her get some more strength in her bones. Her hip and leg have turned out recently so we are seeing the consultant and possibly more x-rays.

Faith has finally recovered from her chest infection starting in October. She has had some smiles over the past 2 weeks and we are loving it as it is so rare. Faith loves massages of her legs and feet with creams  – she gets great pleasure from touch.

Mae is getting used to secondary school and lots of nice friends. Mae’s hamster (Popcorn) very sadly died at Christmas time and Mae was devestated so we bought two little dwarf russian hamsters called Yin and Yang. We now have a Syrian called Violet and the 2 little ones. So sweet and fluffy and all very busy on the wheels at night! I think we need to get the free standing ones so we can get to sleep. Mae loves her animals. Faith enjoys feeling their fur too.

Thank you everyone for the spectacular Christmas cards you sent and their special messages from England, Australia, Korea. Amazing! Thank you for your gifts and cards Rebecca Butler! Mae loves the pencil case and the heat up owl – she is definitely going to school with the pencil case this week. Please can you send us your email and address again as we have lost it! Thank you to Becky Rideout for Faith’s cd too as we have listened to it lots of times. Please can we have your email and address too Becky! And lastly, hiya Claudia! Hiya to Hazel and Bev too!

Update 29th November 2014

Faith has just recovered from a chest infection. We were in hospital for chest x-rays but all is okay now. Phew.

We are very excited for Christmas. We have the advent calendars at the ready! We will attempt to bake a gingerbread house next week! Could be interesting and messy.

Thank you for the post recently. We got fab Christmas stickers from Kirstie, thanks!! Thank you to Regina from Switzerland for the super soft and fluffy neck scarf, it is so perfect to keep Faith warm on chilly days. Thank you Bev for the parcel for the girls! I have just got it and will hold on to it until tomorrow! It’s super exciting and beautifully decorated with stickers. Thank you to Claudia for Mae’s Christmas calendar card, she loooooves it!

Update 1st October 2014

Faith is enjoying baking cakes at school and listening to the British Bake Off on television with her sister. The family are addicted to making our own chocolate chip cookies at the moment. Faith sampling the melted chocolate of course! Mae helping at any opportunity to sample as much chocolate as possible too!

Faith has also been enjoying walks out with her wheelchair, crunching over the autumn leaves (and dodging dog poop!) and loving being a teenager!

Update 4th September 2014

This is a very exciting month for Faith. She becomes a teenager! Thirteen on the 13th September. Faith went on the London Eye and a London Thames Cruise for an early birthday trip with the family. She loved all the sounds and wind in her face. Very windy on the Thames! Mum will try and make a London Eye cake for her birthday – try is the word.

Faith has enjoyed the last few days of summer holiday going for walks in her wheelchair to the local parks and lakes with her sister Mae. We saw some ducks today and lots of friendly dogs. We always have to stop and stroke them.

Update 29th July 2014

Faith has finished another year in secondary school, it was a wonderful celebration day and a certificate was awarded to Faith for her good communication skills with the school ipad! Well done Faith.

She has been pampered thoroughly so far this summer holiday – nails and fingers painted lilac, and her hair in plaits, bunches and amazing styles. Well, she is nearly 13!

Mae has been swimming and in the paddling pool in the garden, playing with her build a bear and styling Faith’s hair. Oh and of course, the compulsory lounging around in your pj’s for as long as you can while watching tv!

Update 3rd April 2014

Faith is doing well at the moment. She’s still struggling with managing her seizures though. Lots of new meds are being tried to try and prevent Faith getting stuck in her seizures.

Faith is now only just tolerating her feed properly after her spinal surgery back in November. Horrid reflux and not taking in enough fluids meant she was over heating. We have been very gradually increasing it so she doesn’t gag too much. Otherwise it is projectile milk everywhere!

Faith has been very productive at school making a paper Easter chick basket, a fluffy tailed Easter bunny poster, and planting seeds. Faith loves to cook with chocolate (loves the warm smell of chocolate melting) and the feel of it in her fingers. Anything messy really! All tactile. She is having hydrotherapy at school which gives her the freedom to move easily in lovely hot water, it is so good helping her muscles relax. A real mermaid floating around.

Faith and Mae will have an Easter egg hunt around the garden, although they know all the good hiding places. Nothing like being outside for a bit of fresh air as it blows the cobwebs out. We will also be making some Easter chocolate lollies – again, melting chocolate!!

Mae is keen on hamsters (as she is a very responsible owner of her hamster, Popcorn) and at the moment is interested in (addicted to)  McDonalds monopoly stickers.

Update 3rd November 2013

Faith’s surgery was canceled after we had left for the hospital. She will now have it this week.

Update 22nd August 2013

Faith will be going into the Evelina hospital for her surgery on Wednesday 2nd October 2013 to have her spinal surgery on Thursday 3rd October. She will aim to be in the Evelina until Monday 7th October provided she doesn’t have any lung complications as with her previous operation.

Update 2nd May 2013

Faith is having another spinal surgery and it should happen within the next 12 weeks. She is having some bolts cut off /shaved and some moving /adding of others in the lumbar region. The reason for this surgery is because Faith can only currently sit in her wheelchair for an hour before having to come out of it and side lie as her lower back swells up and she is in pain. This makes it impossible for Faith to ever go anywhere and also the fact that Faith is now unable to tolerate lying on her back because of the pain.

We don’t want Faith to have to go through the pain of an operation again so we’re feeling really sad about it all.

Update 17th April 2013

Faith is just recovering from her gastro peg replacement operation. Her back is improving from the spinal surgery – but we still have to have her lying on her side after every 1 hour in her wheelchair as her back begins to swell up! Never mind. She went for a walk in her wheelchair in the sun today. Almost ran over a dead frog! Poor thing.

Faith is having a pampering haircut session in ten minutes and then snuggled up to bed. She loves a head massage and I will give her a foot massage too! Mae is running around the house very loudly and will have a hair cut too. Both enjoy playing in water. Mae leans over the bath when Faith has one and helps shampoo her hair. Faith has the cleanest hair in the house (at least a hairwash a day!). She will have her nails painted later too. Mae is busy eating chocolate from Easter! And ‘busy doing nothing’ she tells me!

We have central heating now too. Six weeks with a broken boiler and only fan heaters to warm us all. Luckily Faith has an electric blanket!

Daffodils and other flowers are out in the garden. We love bringing them in to the house for everyone to enjoy, especially smelly ones (roses etc) for Faith.

Update 23rd December 2012

Faith is recovering well from back surgery. However, she has a swollen lower back. The screws from the spinal pinning seem to be in place, but one may be rubbing the skin around it.

Faith can enjoy her baths now and being at home with her family and Mae.

Faith loves the Christmas lights and is busy listening to Christmas music and Mae, her sister, pulling numerous crackers!

Merry Christmas to everyone at Post Pals and thank you!

Update 4th April 2012

Faith is having her VNS (vagus nerve stimulator) battery in her chest changed in Kings Hospital in the middle of April. She is also on the list for major spinal surgery. We will only be given 8 weeks notice prior to surgery and it will have to happen before this November 2012 when her severe scoliosis (crushing her organs) will have fused so surgery cannot happen after then. She will have 6 months to a year recovery. We are all extremely anxious but will have to wait for the date that could be any time. Her seizures are also keeping us very busy all through the nights at the moment. Not good for the bags under my eyes.

Debbie sends lovely cards and gifts to the girls. She is great. Claudia from Germany has sent us Lush cosmetic products so our house smells divine. Mae is crazy on cooking at the moment and drawing. Faith is enjoying the music cd’s people send (thank you all!) and being pampered. Thank you to all of the wonderful people sending cards and gifts as it makes our day. The post is so exciting now!

Hope you all are okay and Happy Easter.

Update 27th October 2011

Thank you ever so much for the Halloween packs. We had screams of delight from Mae, and Faith had her ‘interested/what is going on’ face! Mae is putting the sticky bat and spiders in the porch already! They loved the spider web, bubbles and glow sticks too! It was a great surprise, thanks. Mae loves the skull ring lip gloss and Faith has ‘tracked’ the wonderful pumpkin glow stick. The best ever gift bags I have seen. It must have taken lots of hard work getting everything together. Tomorrow we are making the ghost chocolate lollies from the book!

Faith is getting a bit better every day. We’re just waiting to find out if her 2 scars are infected. She also has thrush from the antibiotics – not surprising.

Update 13th October 2011

Faith still has a temperature and is off epidural now. She is being sick but they are not sure if it is the morphine or infection. They will decide if we come out tomorrow (Friday) but it’ll probably be Saturday or Sunday. I will keep you posted.

Thanks for our post. Mae loved the Japanese card and we’re going to find out what it says.

Update 1st October 2011

Faith has had her pre op assessment (bloods, X-rays, etc) and it is all go for the hip reconstruction on 11th October!

Faith has enjoyed being in the garden lately with her feet in a bucket of cool water. Her sister Mae joined in and splashed everyone.

The cards, personalized or handmade, are super and so so clever. Thank you everyone for your kindness. All letters are so lovely to receive and exciting to see them arrive by the postman. Faith received a super light up lamp – thank you. It is a multicoloured lava /glitter lamp and is brilliant. It can go right up to her face and lights it up and Faith loves it! We have also just received the letter about Dotty the Dalmatian and the girls are both so excited about getting a puppy in the post! Thank you.

Update 12th September 2011

Faith is having a complicated operation on 11th October. She is having her leg (femur) broken and a triangle taken out of it and a bone graft from her hip bone to reform her ball and socket joint. She will have to have rehabilitation for a month and lots and lots of pain killers. This is because her bones are like honeycomb and crumbling inside and her hip is about to dislocate if she does not have this operation to re-align it.

Please could everyone send her good luck and wish her well for the operation. It has been a year in the planning and fingers crossed it all goes well.

Story written 2009

Hanna was born with a condition called VACTERL. All the letters stand for something that is associated with the diagnosis.

We were not aware that Hanna had the condition before she was born so it was a big shock to us.

The midwife gave Hanna her first bottle but she choked and turned blue so the resuscitation team were called. Immediate investigation found that Hannas’ oesophagus coming from her stomach was joined to her trachea and her oesophagus from her throat was a blind end. This is called tracheal oesophagus fistula and oesophageal atresia -TOF/OE – the T and E (American spelling).

At sixteen hours old she had to have a life saving operation to join the oesophagus back up which was thankfully successful (although reflux is severe).

Subsequent investigations found Hanna had a flat trachea, a TOF cough (often compared to a seal or dog barking), extra ribs (V – vertebrae), anal stenosis (A – anal), Ventricular Septal defect (VSD) (C – cardiac), unilateral renal agenesis (only one kidney) (R-renal), malformation of the right thumb (L- limb).

Hanna had surgery at 3 years old to improve the function of her thumb.

Hanna has many hospital visits each month as with all the different organs involved she is looked after by a large team of consultants.

Hanna also suffers from asthma and has many chest infections and lots of missed schooling, and misses her friends a lot.

Update 21st October 2012

Lotty and Hanna really enjoy getting their Post Pals mail, it is the highlight of the week when getting their letters and gifts. There are some very thoughtful and kind people out there who take time out of their very busy schedule to think of my girls and that really warms my heart.

Now Hanna is at senior school, with the long hours (she is there most days from 8am – 5.45pm) and ever increasing amounts of homework, she feels it is the right time to move on from Post Pals. It is very important to Hanna to reply to all mail and she just can’t fit this into her busy life now, as already she has been off school poorly with her condition due to getting really tired. Lotty isn’t too impressed with this decision though!!

So I want to say, although our family will no longer be active Post Pals members, we still have all the Pals and their many friends in our thoughts and prayers.

Update 10th April 2012

Unfortunately Hanna’s health hasn’t been very good recently. She has had a nasty chest infection which also exacerbated her asthma. She ended up having a week off school, which really upset her as she loves school and misses her friends a lot when she is poorly.

Better news from her nephrology appointment. Her one kidney is behaving itself and working hard enough to do the job for 2!! We are very pleased to hear this and this cheered Hanna up.

Luckily Hanna’s chest improved enough to allow her to go to a ballet audition to appear in Swan Lake with the English Youth Ballet. There were 133 girls at the audition and they were only needing 50. We are very proud of Hanna as she got chosen!! She is very excited but it is going to be a lot of hard work with long rehearsals so we are keeping our fingers crossed that her health will be OK.

Thank you very much to everyone who sent Lotty a birthday present. She had a fabulous day and celebrated her day by going to the pub for lunch and having a Tweenie birthday cake!!

Also, thank you for thinking about my girls over Easter. With all the beautiful handmade cards and gifts they received it was more like Christmas than Easter. We have got enough chocolate to open a sweet factory so it’s a good job both my girls love chocolate, although they will have to hide it from Daddy!

I’m sad to say due to the mad increase in the cost of postage stamps Hanna will no longer be able to write to all you lovely Post Pals friends. This certainly doesn’t mean she doesn’t appreciate the letters and gifts – they are all so welcome and really do put a smile on her face. If you have an email address that you don’t mind Hanna knowing, she would love to continue to keep in touch this way.

Update 23rd February 2012

Hanna has had a good half term. She went to stay at her Nan’s for a couple of days which she always enjoys. We went bowling and Hanna was not impressed when Lotty beat her!!

The best news she received though was finding out she has been offered a place at the school she really wanted to go to. All the hard work she put in has paid off. She has always been determined not to let all her health problems stop her doing anything she wants to do in life and she has once again proved this to herself and to others. We are very proud of her.

Hanna is busy with rehearsals for a drama production at school and is very excited to be doing 3 performances at the beginning of March. She is also involved in a dance festival with school.

Hanna’s health continues to be good except for her continuing wrist pain. We have an annual nephrology appointment coming up soon so fingers crossed her one kidney is still working well enough.

Hanna’s Gran is now half way through her chemo. We have been raising funds to reach a target of £500 for Cancer Research, and then I am having my head shaved.

Thank you to everyone who continues to be so kind and generous to both my girls. Hanna especially likes to hear from her regular friends but we have also had lots of post from new people recently so that is great too!!

Update 11th January 2012

I hope you all had a merry and relaxing Christmas and a happy and healthy New Year to you all!!

We had a great family Christmas at Center Parcs, although Hanna didn’t have a brilliant Christmas day as she was in bed all day vomiting. She was so upset as she also had to miss all the activities we had planned for Christmas day and Boxing day. Fortunately, she was feeling well enough by the Tuesday to open all her presents and join in again and got to do the activity she was most looking forward to; a painting pottery session. She chose to do a cheeseburger money box and when it had been fired we collected it. She had the biggest smile on her face and all the days she had been poorly were forgotten. We also held off making our Christmas dinner so we all enjoyed a family meal together on 28th December!

We went to visit Hanna’s Gran for Hanna’s birthday and New Year. Although Hanna’s Gran is still having chemo, she was having a break before 16 weeks of intensive treatment, so she was in fairly good spirits and could join in with all the parties.

I want to thank all the people who took the time in the busiest time of the year to think of my girls and send them a Christmas present. Each and everyone of them was appreciated and put a great big smile on my girls face. I would love to list everyone who sent something but incase I accidently miss someone out, I will just say a big general thank you from the bottom of my heart.

Also, thank you to all of those who sent Hanna a birthday gift. Hanna enjoyed opening them all, even though she had unwelcome help from her little sister Lotty – sisterly love eh?!!

Thanks to the mild winter we have had, Hanna’s chest problems have been less severe and she even made it to her school Christmas Party – the first one since she started school where she hasn’t been off school poorly/in hospital!

Her wrist continues to be troublesome so we are hoping the next visit to the plastic clinic may offer her something else to help her cope with the pain.

Lotty has had a hospital admission with croup/asthma attack and is still struggling with her chest, but as always keeps smiling.

Update 10th September 2011

Firstly, sorry for such a delay in updating Hanna’s page. The summer holidays have been very busy with some very good and some very bad but mostly in between news!!

Health wise, apart from the constant pain/problems Hanna is having with her wrist, the summer hasn’t been too bad for her. We managed to get much better control of her hayfever this year so that helped her asthma stay better too.

Lotty, on the other hand, has really been struggling with her health and along with asthma problems, she has now been diagnosed with a heart murmur and we are waiting for a heart echo.

Hanna took part in another dance competition and came 5th in her solos and won gold and bronze medals in her tap and ballet groups.

The biggest highlight for Hanna though was winning an award for bravest child through the charity Wellchild. It was an amazing experience, with an award ceremony in London. There were lots of famous people there and Hanna even shook hands with Prince Harry in a VIP reception. Here is a link to their website if you want to see some photos of the evening:

http://www.wellchild.org.uk/Events-Awards.asp

Unfortunately we also had news that Hanna’s Gran is very poorly and so thoughts and prayers to her and the family would really be appreciated.

Hanna is enjoying being in Y6 and is now working hard towards getting a scholarship to the school she really wants to go to. She won’t sit the exam until January but is starting to do practice tests to help her feel more confident.

She has also started going to Guides. She was really nervous about going as she would be the youngest there (as opposed to being the sixer (leader) of her Brownie six) but she came back full of enthusiasm!!

Thank you to all of you who have sent post out to Hanna and Lotty over the summer. Hanna says now she is back at school she will find time to write some replies before she starts getting too much homework!! Also, thank you to everyone who has sent gifts to the girls. They are always so appropriate and appreciated and I wish I could bottle the smiles and giggles they get when opening the parcels.

Update 13th July 2011

A ballet exam result at last!! It was worth the wait though, as Hanna got an A. We were really pleased for her and I think she was really happy too, although she never let on!!

Hanna’s wrist seems to be improving slowly. With physio and the support she wears everyday now, Hanna is finding it easier to use and needs much less medication for the pain. She knows that stopping the gym training has really helped but she still really misses it.

Hanna has been kept really busy with lots of activities going on at school. She has done a filming course, had visits to some of the local senior schools, visits to independent senior schools, winning her race at sports day and completing a writer’s course for children on the gifted and talented register at school.

Hanna is looking forward to the summer holidays as she has a dance competition, a holiday with her Gran, and most importantly lots of lie ins!!

Hanna continues to have lots of hospital visit/appointments but all her consultants are pleased with her at the moment.

Thank you to all the kind people that continue to write to Hanna and Lotty. Each letter and gift is met with a big smile and that, in my opinion, is the greatest thing to see.

Update 10th May 2011

Well, after what we thought was a great start to her physio sessions, we came away after Hanna’s last appointment feeling very down hearted.

It seems Hanna was being too brave with the pain and despite intensive physio, Hanna’s physiotherapist is unhappy about the lack of improvement and advised Hanna to stop her gymnastics.

Hanna was very upset about this as she loves her gymnastics and its been a big part of her life since she was 3. Hanna understands that it is important to get her wrist sorted as it’s the hand she writes with and uses for most things, so if left untreated could cause life long problems, but still found it hard to accept the decision we all had to make.

Also, as the Hayfever has kicked in Hanna has been suffering with sneezing and wheezing, so not a good few weeks for her.

In true Hanna style she has tried hard to not let it affect the rest of her life and she smiled through the weekend at a dancing competition in which she did really well. We were all so proud of her.

For all those asking about her ballet exam results – still no news!! It is driving us all mad and we have never had to wait this long for results.

Again, thank you all so much for sending Hanna and Lotty fantastic letters and gifts. Lotty wanted to add a special mention to Libby for the plasticine kit. It kept her entertained for hours!!!

Update 11th April 2011

Hanna has had a better few weeks this month. Although her wrist is still sore, the physio she is having is really helping her manage the pain, and along with a new wrist support, she is now much happier and is even managing to go to all her gymnastic sessions.

Hanna has also just been on her first residential holiday with the school. It was fun and games sorting out all the medical care/food issues etc with the teachers and holiday staff but so worth while as Hanna had a fantastic time. She had the chance to try out quad biking, archery, fencing and abseiling. The only down side to the holiday was that she lost her wrist support – typical Hanna!!!

Hanna has just attended another renal appointment for her yearly MOT. She was very brave whilst having her blood tests, so I was very proud of her.

Her physio appointments continue and her physiotherapist hopes that with intensive treatment the muscles that are weak in Hanna’s wrist will strengthen and hopefully the pain will subside. I am really pleased with Hanna as she has been doing her physio religiously and always with a smile!!

Thank you very much to all the people who remembered Lotty’s 3rd birthday. Cards and gifts continued to arrive for about a week so Lotty thought everyday was her birthday and kept on singing Happy Birthday to herself!! Also, thank you to everyone who continues to write back to Hanna. She loves receiving and replying to as many as she can.

Update 4th March 2011

Hanna has not had a good few weeks. First she was sent home from school feeling unwell and it turned out she has tonsillitis again. She was really poorly for a couple of days with a temp of 39.2 and she never left her bed. Once she had got over the worst of this she then developed another cold and chest infection so she was up most nights coughing for a good 2 weeks. So she has had a lot of time off school and was missing her friends a lot which got her down a little.

I’d just got Hanna well and back at school when Lotty then came down with the cough/cold /high temp and she then developed a chest infection. She went off her food and was such a sorry sight – never smiling or even wanting to play. She lost some weight (which had struggled to put on in the first place!) but is slowly putting it back on again.

Luckily they are both now well and enjoying nursery and school once again. In fact, Hanna came home from school tonight with a big smile on her face as she was awarded ‘STAR OF THE WEEK’ for tackling problems head on with determination and with a smile too!!

Hanna’s renal scan went well and they were happy with the size and function of her one kidney so that was reassuring to hear.

Her wrist/thumb problems haven’t been so straight forward. Her plastic surgeon sent her for an x-ray and thought he saw an abnormal bone growth on her wrist. He was sure that this was the cause of the pain and said that she would probably need a small op to fix the problem. As he isn’t a bone specialist he said her would have a meet with the orthopedic team to discuss it. We came home relieved that although she would need surgery there was going to be an end to the pain.

However, the plastic surgeon rung a couple of days later to say although the bone wasn’t entirely normal it was still in the limits of normal and wouldn’t be causing the pain. So, back to square one!!
Another visit to the plastic surgeon and it has now been decided to refer Hanna to the physiotherapist with a hope that they can help the pain with exercises and possibly fit her with a splint. So, tune in next time… and thank you if you are still reading!!

Not a very positive update I’m afraid but hopefully next time we may have better news to share.

Thanks to everyone who continue to write, email and send gifts to Hanna and Lotty. They have been greatly received as always but even more so over these last few weeks.

Update 3rd January 2011

I hope you all had an enjoyable and peaceful Christmas and a happy and as healthy as possible 2011 to you all.

Unfortunately Hanna’s last week at school turned out to be a repeat of last year. She went down with a nasty cold, high temp and cough, which as usual affected her asthma badly so all the parties, celebrations and the retirement assembly that she had been practising for all last term were missed. Obviously she was feeling quite down and missing her friends badly and even I was having difficulty raising a smile!!

This is where all you wonderful people, who take time out of your busy hectic lives to think of other children, means so much to me and my girls.

Every time a Christmas card arrived or parcel to go under the tree, Hanna’s little face lit up and this made that week before Christmas all the more bearable for her. Lotty was just as excited to get all her post and is now an expert parcel un-wrapper!!!

On Christmas day I was very organised and wrote a list of people who sent Hanna and Lotty gifts and what they received so I could then list it all on here BUT… that was 9 days ago now and can I find that list…!!! I just wanted to let all of you know who sent gifts to them that they were really appreciated.

So many of you sent fantastic gifts to both Hanna and Lotty – they couldn’t believe their eyes when all the Post Pal parcels were piled up for them to open after lunch! Thank you is never enough but I just want say THANKS to all of you who sent gifts. Lots of fun was had with stickers, craft activities and nail varnish and full tummies all round after chocolate and sweets!!

Also, after such a busy time I want to thank all of you who remembered Hanna’s 10th birthday. She was very impressed with the amount of Hello kitty items she now owns!!

Hanna’s hospital visits start on Friday with a kidney and urinary tract scan. I will let you know next update how that goes. She is also having problems with her wrist and hand that she had surgery on, so an appointment to see her plastic surgeon has been brought forward.

Ending on a positive note – Hanna has just found out that she passed her Grade One piano. She was very pleased as she found out that the examiner was a very strict one and even failed a few candidates!!

Update 4th December 2010

Hanna has just been seen by her chest consultant. He was happy with her lung function results and wants her to leave her medication as it is and see how she goes over the winter months.

Hanna took her Grade 1 piano this week. Thank you to those who sent her good luck wishes and cards, it was very kind of you.

Hanna and Lotty were very excited about the arrival of so much snow. They have both been out to play but were soon back inside in the warm!!

Thank you everyone who continues to send the girls great letters/emails and fantastic gifts.

We hope you all have a fantastic Christmas and Happy New year x

Update 8th November 2010

Hanna continues to stay well and is making the most of it by enjoying her dancing and gymnastics. She has also just gained her ‘friends to animals’ and ‘musician’ badges in Brownies. Her piano exam is on the 1st December. She is practicing hard but is a little apprehensive as this is her first music exam, so lots of good luck wishes from all her fantastic post pals would be appreciated!!

Hanna saw her chest consultant last week. He was pleased with her lungs and asthma and she had good lung function test results. As winter approaches though he wants her to leave her medication as it is to see how her chest copes this year before thinking of the possibility of reducing some of her inhalers. This is great news as up until now when any medication changes have occurred it has always been an increase in her inhalers/adding new meds.

Lotty is as cheeky as ever and her GORD, asthma and eczema are behaving!!

Thank you as always to everyone who sends my girls letters, emails and gifts. Anything craft wise is given a real thumbs up at the moment as Lotty has discovered the joy of sticking and colouring and it is great to see both my girls, despite the age gap, enjoying activities together.

Update 18th October 2010

Hanna continues to do well health wise and so is really enjoying being at school with her friends every week.

Hanna took her Grade 2 tap exam a couple of weeks ago and was awarded a distinction.

She is now practicing hard for her Grade 1 piano exam which is in November – still waiting for a date to come through!!

Lotty is also good this month. Her eczema is still up and down but is much improved from the bad episode she had so she is back to our smiley cheeky girl again!!

Thanks so much for all the post that continues to arrive for Hanna and Lotty. It’s still so great to see their excitement when letters and gifts arrive for them. Special mention this month goes to two people – Mandie and Ana-Alicia, as Hanna couldn’t decide between them. Both have sent such fabulous letters, poems and thoughtful gifts to both girls.

Update 14th September 2010

Hanna has enjoyed her summer. As her health is always better during the summer we have tried to do as much as possible together as a family.

We have met up with friends, been to visit family in Durham, Hanna has been on a caravan holiday with her Gran, and she has also competed in a Dance Competition. She did very well and I was very proud of her.

True to form, Hanna had been at school only 2 days before she came down with a cold with a temperature and streaming eyes and nose to boot!! Despite being up most of the night coughing and struggling with her chest she still went to school and finished her first week.

Upping her asthma meds seems to have kept the chest infection away that we were worried she would get and she is now feeling a little better.

On a positive note, she came home from school saying she loves her new teacher and that she is going to work very hard this year to keep up with her friends. Despite having less than 70% attendance last year she has been put in the top group for numeracy, literacy and reading. We are all very proud of her achievements.

Lotty has really been suffering with her eczema these last few weeks and has ended up on steroids which don’t really seem to be helping her. She has been very sore and a little grumpy (who can blame her) so I want to send a big thank you to all of you who send Lotty gifts too as this has really cheered her up these past few weeks.

Again, a big thank you to all of you who send letters and gifts to Hanna and Lotty. It really does make their day to open the post that comes for them. To all of you who continue to reply to Hanna – this really means a lot to her, so keep it up!!

Hanna wants the special mention this month to go to Katherine who has sent her the most fantastic quilt ever. She says it’s the best quilt she has ever had and is very proud to sleep under it every night!!

Update 9th August 2010

With the weather turning back into the typical British summer, Hanna’s asthma and hay fever have become much better, so she is enjoying her school holidays now.

We have just returned from a holiday at Donna’s Dream House in Blackpool. It is the best holiday we have had! The house was brilliant with a toy room that resembled Toys R Us and I’m sure Hanna and Lotty would have been happy to stay in it all holiday! Len Curtis and his team made sure we were well looked after and courtesy of the vouchers we were given as part of the holiday we were able to visit the Sealife centre, Louis Tussauds waxworks and Blackpool Zoo. We wanted to go in the Tower too but just ran out of time!! If you are considering applying to go – do it!! Thank you to Viks for recommending it.

Many thanks, once again, for all the letters and gifts that have been sent. Hanna has received some lovely Eeyore gifts and lots of girly stuff and craft kits that have kept her busy!! A special mention this month to Becki who sent the girls a seesaw – it’s fabulous – so thank you for your generosity.

Update 10th July 2010

Hanna is struggling with the hot weather. The high pollen counts are really affecting her hayfever and asthma. Most days her eyes are red and sore, she is constantly sneezing and wheezing, but in true Hanna form she doesn’t let it stop her!!

Hanna took part in her schools sports day last week and came second in her race – so I was very proud of her!

Hanna has also been a very busy Brownie and has recently gained her first aid, agility, collectors and dancers badges. She is also close to completing her booklovers badge.

We saw her cardiac specialist last week and following several tests/scans, ECG’s and heart monitoring, he has decided that Hanna’s heart episodes are not due to arrhythmias which is good news, but this leaves the situation unresolved. He is unsure of what might be causing it, but is going down the root of blood pressure problems. So we have to make sure Hanna drinks at least 2 litres of water a day and has plenty of salt on her dinners!! This is going to be revised in 6 months time or sooner if the episodes worsen or increase in frequency.

Thanks once again to all the kind people that have taken the time to write to Hanna and send her gifts to keep her smiling!! Hanna wants special thanks this month to go to pal Alice P. Despite all her health problems she took the time to send Hanna a parcel full of wonderful girly things that she loved. Also, Hanna wants to nominate Richard Brisley for the weirdest parcel of the month award – you know who you are and never mind smiling, Hanna was crying with laughter when she saw what it was and why it arrived for her!!!

Update 6th June 2010

Hanna has had a good month. She has had another episode of her heart problems but apart from that she has kept well. The warmer weather does seem to help Hanna’s health and as long as we keep on top of her asthma and hayfever with lots of medication she seems happier too!

She had an appointment with her plastic surgeon who was pleased with her thumb and her fine mobility skills.

During half term Hanna had the opportunity to go to a holiday club again where she thoroughly enjoyed herself trying out archery, arts and crafts, trampolining and go-karting.

We also seem to be getting Lotty’s medical problems under control and so she is now enjoying being able to run around in the garden.

Thank you once again for all the fantastic cards, letters, and emails you have sent Hanna and Lotty. Also a big thanks to all the generous gifts that have been sent to the girls. Again there have been so many that I can’t remember everyone individually but Hanna wanted a mention this month to go to Cheryl who sent Hanna a gorgeous Eeyore t shirt and Lotty a cute cuddly Pooh bear from Disneyland Paris.

Update 30th April 2010

Good news from us this time!! Hanna had an appointment with her surgeon following her barium swallow. The results showed no significant strictures and fair peristalsis, which was good as this means that Hanna will not need any surgery – which she was very happy about. The surgeon thought the cause of Hanna’s eating problems was a severe flare up of her reflux which caused inflammation of her esophagus so it was difficult and uncomfortable for her to swallow food. As it seems to have settled almost back to ‘normal’ for Hanna, it was decided to leave meds as they are as to see what happens.

On another positive note, after having Vikki suggest that we might qualify for a holiday at Donnas Dream House, Hanna’s Nan nominated us. We have just found out we have been offered a holiday in August. Hanna and Lotty are very excited as after Hanna’s dad lost his job in the summer we thought a family holiday this year was out of the question.

Hanna has been overwhelmed with all the gifts she has received recently. She is very selfless though and is concerned that Lotty has not received any!! Lotty has been quite unwell with her asthma and GORD and at the moment takes more medication than Hanna and so she said Lotty deserved some gifts instead. So a request from Hanna: ‘If you were going to send me a gift in the next few weeks could you send Lotty one instead. Thank you.’ I am incredibly proud of my little girl for always thinking of others despite all she goes through.

After the TV feature of Post Pals the amount of post and especially emails Hanna has received has been incredible!! There are just too many to list but it is wonderful that people that don’t know Hanna have taken the time to send her words of encouragement and praise, so a big thank you to you all. You are all fantastic yourselves for taking the time out of your busy lives to make a child smile.

Update 3rd April 2010

Hanna still continues to have issues with her swallowing/eating. She had her barium swallow as planned and now we wait for an appointment to discuss the findings with her surgeon. Why does it always seem to be a waiting game?

Unfortunately Hanna contracted tonsillitis a couple of weeks ago which caused her to be in bed for nearly a week with a high temperature and unable to eat anything at all. She has lost quite a bit of weight and as eating is difficult anyway she is struggling to put the weight back on. She says she will suck all the Easter chocolate she gets so that will help her!!

Despite being poorly, Hanna managed to take part in the Sport Relief Mile and we even saw Dick and Dom. Hanna was very excited as they ran right past us!! We managed to raise £50.00.

Thank you so much to all those who have continued to correspond with Hanna. She loves replying to all who include an address and I have to fight to use the computer now as she is always typing/emailing to someone!!

I can’t remember everyone as there are too many to keep track of but you know who you are and you are all stars for brightening up my daughters’ day. Big thanks to Sarah G who sends so many letter/cards gifts, not only to Hanna, but also to Lotty too.

Update 7th March 2010

Hanna has had a tough month. Eating has been a struggle and her ‘TOF cough’ has reared its ugly head and has really got her down. She has spent lots of time off school and has been really missing her friends.

We had an appointment with her surgeon as we are concerned that her eating problems may be due to a stricture in her oesophagus. Her surgeon requested an urgent referral for a Barium swallow which will help him decide whether she needs surgery for a dilation or whether her eating difficulties are caused by something else. This is scheduled for 23rd March so I will post an update when possible. For the moment it’s just a waiting game.

Hanna enjoyed her gymnastics competition and her floor routine went really well. Her vault wasn’t so good but overall she came 14th, which was very good as she has missed a lot of training sessions due to asthma and chest infections over the winter.

Hanna is looking forward to taking part in the Sports Relief Mile and it is something to focus on to keep her mind off her forth coming tests and possible surgery.

A BIG thank you for all the cards and gifts Hanna has received. They have really cheered her up when she has been fed up and in discomfort and she especially liked the Hello Kitty toy that came all the way from Japan – the official home of Hello Kitty!! Once again, thanks so much to everybody that has sent post to Hanna, it is very much appreciated and has helped her through a tough few weeks. People’s kindness has astounded us.

Update 3rd February 2010

January has been a better month for Hanna. She has been full of cold but with increased medication we have managed to keep chest infections at bay (so far anyway!).

Hanna has had some investigations on her heart-echocardiogram and a 24 hour recording of her heart activity as her heart consultant believes she may be suffering from an arrhythmia.

As Hanna is new to Post Pals she has only just had her postal address put on her page, so we had no post in January, but thanks to Amber, Jessica, Charlee and Coire for the emails she received. They really cheered her up.

Hanna has a gymnastic competition next week but with an on going ankle injury she is not too hopeful that she will do well, so any good luck messages would be welcome to encourage her to stay positive!!

Update 13th January 2010

Hanna has had a difficult December. She caught a virus which left her in bed for a week with very high temperatures and no appetite. This then turned into a chest infection so antibiotic therapy was given. After another 2 weeks she was feeling a little better. This meant she missed lots of schooling and she was especially upset missing the last week of term when all the fun activities, such as the class party, making decorations etc, took place.

Fortunately she was well enough to enjoy Christmas and got lots of nice presents. Five days later was her birthday so cue more presents -we now need an extension for all the toys!! She was very excited to receive the smarties from Post Pals, so thanks for that!

Story written 2011

Harrison is known as Harry.

Harry was born 5 weeks prematurely and spent three days in special care. He was then in and out of hospital with feeding problems, reflux and infections. At 18 months old he saw an immunologist and was diagnosed with an immune deficiency. He then started 3 weekly hospital visits for immunoglobulin therapy but was still in and out of hospital with infections.

Harry was in hospital aged 3 with ecoli septicaemia and was very sick for 10 days. It was also discovered he had Epstein Barr virus and had a months treatment with a chemo drug called Rituximab which wasn’t very nice at all.

Harry also has behavioural problems and was diagnosed with ADHD and then when he started school it was picked up that he had developmental problems and was diagnosed with autism.

Harry started having subcut immunoglobin therapy and I was trained to do this even though I hate sticking needles into my child.

Harry was referred to the geneticists because of his range of problems and they have found that there is a problem on his x chromosome so are doing more tests. The genetic testing has been very stressful for the whole family as I may carry the same gene and may have passed the abnormality onto him so feel so guilty. Ellie, his 15 year old sister, will also need testing as this could impact on her future plans to have children.

Harry is very small for his age and has now been referred to the endocrine clinic as he may need growth hormone so the daily battles still go on.

Update 20th October 2018

Harry has been troubled with urine infections and is actually off school with a chest infection, so he’s on antibiotics again. He was at hospital and he’s grown a few cm, but put on a massive 2 kg since June. We’ve been trying to get his food intake up in the day so he doesn’t have to have it through his PEG overnight .He had a lovely quiet birthday, so thank you all for his cards and pressies, Mummy has been poorly and in hospital lots, so we’ve not been away on holiday, but we are hoping for a few days away with grandma to Southport in a Caravan at half term. Thank you all for the smiley post I love it. Best wishes to everyone Harry and Liz (mummy )

Update 20th November 2017

Harry is still having weekly immunoglobulin therapy infusions and is so fed up with it at the moment. He has nightly injections to make him grow. His weight is slow, so he has a feeding tube and is fed overnight with this. He has recently had a bad tummy and has been off school over a week, he’s fed up with feeling rotten. He loves receiving post and smiles, as life is horrible in the winter as he picks up more bugs and infections due to his Immunodeficiency. Thank you to everyone that writes to Harry and sends presents to cheer him up.

Update 29th January 2017

Thank you everyone who has sent Harry post and gifts over Christmas, he has had a wonderful time. Harry has still been having infections, weekly immunoglobulin infusions, daily growth hormone injection and overnight peg feeds.
He has put on a massive 6kg since March which is wonderful.

We had a phone call from a Genetic doctor and Harry has been on the DDD study for six years. They have discovered a new Gene mutation called TLK2 and this is why Harry has all his medical conditions. So we have a reason for his difficulties, it’s hard to take in but there are only 5 worldwide so not much is known about it .
Thank you for your continuous support, happy smiles and gifts.

Update 2nd April 2016

Fingers crossed Harry might get out of hospital, he went back to theatre and had his peg changed to a button, as the pressure was too high.This was causing it to be too tight and it kept getting infected.

Update 2nd December 2015

Harry has had a really bad month, he has been admitted to hospital 3 times with viruses and he is really struggling with everything. We have just received a letter from the hospital and they are listing Harry for a gastrostomy, so we just have to wait for the appointment now.

Update 6th September 2015

Harry has been in hospital for a UTI. Just two days after he got home though, he ended up back there with shingles. He’s had a rough month, but luckily, we got him well enough in time to start High School.

Update 6th August 2015

Harry is still on daily injections of growth hormone and continues to have his weekly immunoglobulin therapy, however the consultant has tripled his dose due to having loose bowels. He is coping well but not gaining as much weight as expected, so they have been talking about a gastrostomy.

Harry is starting High School in September which is going to be stressful.

Thank you for all his post and smiles.

Update 30th March 2015

Harry has been very unwell and lost lots of weight which is a concern. The doctors are thinking of giving him a gastrostomy if he doesn’t gain weight. The immunology doctor wants to tripple his infusion dose to 30mg of Hizentra a week instead of 20mg a fortnight. He is going into hospital to have his infusion where he will have three needles giving him his treatment. He’s such a good boy.

Thank you for all his post. He’s really into Minecraft, football and still loves his Lego. Many thanks for everything.

Update 2nd March 2015

Harry has not been well and is going in to hospital on Wednesday this week. He will be having colonoscopy, endoscopy and biopsies on his bowel to see if Epstein Barr Virus is back. I think he will be needing smiles. Thank you for the post that has been sent to him.

Update 1st December 2014

Harry has not been well recently and I went to Birmingham to see another immunologist as I thought our usual immunologist was rather too familiar with Harry and I’m so glad I did.

In 2008 Harry was unwell with Epstein Barr Virus in his bowel and was treated with Rituximab (a Chemo drug). Harry then stopped having bowel problems. This past 12 months his problems have come back and I told doctor about this. He then voiced his concerns to Manchester Immunologist who had obviously forgotten about it, as he said something had come to light and so Harry needs urgent scopes and endoscopies as soon as possible. So we’re now praying it’s nothing sinister and are glad I sought a second opinion. Mummy’s instinct.

Sister Ellie broke her leg and has had to take a year out of uni, and I’ve been suffering with my depression and have also been diagnosed with an immune deficiency, like Harry.

Thank you everyone for our smiles, letters, and well wishes xxxxx

Update 18th August 2014

Harry has had a bad month. He’s been unwell and having some jerking movement and falling a lot of late. Last week he had four falls, one that resulted in a broken front tooth and injured face and leg so he ended up in hospital. He had to go down to theatre to sort out his mouth and teeth and had a brain scan. Luckily no tumours were seen but he’s having further tests for epilepsy. He’s very sleepy and clumsy at the moment so more hospital appointments and now the dental hospital to add to the list.

I have also been on crutches with a bad leg and not been coping well with my depression. I’m feeling very alone and fed up, but thanks for cheering Harry up as he’s not been as happy as he usually is. Many thanks to all.

Update 5th May 2014

Harry is currently in hospital with shingles.

Update 9th March 2014

Harry has been off immunoglobulin for eight months as a trial, but he continued to get sick and his antibody levels came back low, so in December he started back on treatment. At the end of December he was poorly and was in hospital for 8 days with Acute Gastroenteritis and lost more weight.

Chicken pox was going round at school and because of his non existent Antibody Levels and being prone to shingles and the chicken pox virus, he couldn’t go to school. From 2nd December until 3rd March he remained at home with his Mum. This was particularly hard for him because he didn’t see his pals at school and was bored and fed up.

He returned to school two weeks ago and has enjoyed his time back.

Thank you for all the smiley post and gifts from everyone, he loves them. They mean so much to him. Keep well everyone.

Update 4th December 2013

Harry has not been well and has had a couple of bad months. His hypo mobility has been bad so he’s been using his wheelchair more. He was in hospital due to his leg pain and put on stronger meds. After he was discharged he then had nose bleeds and high temperatures so we had to stay. Then he developed a non blanching blood rash and had sepsis so he was put on IV antibiotic for five days and when we came home he still wasn’t a hundred percent and started with tummy pain. We went back to the GP who said he showed infection on his urine. I contacted his Immunologist at Manchester Children’s Hospital who we are seeing next week. Harry has been off his treatment for Immunoglobuling but with recent bacterial infection I’m hoping he will be put back on his two weekly infusions to try and keep him well. Harry is poorly with a tummy bug and his asthma today as well now.

He loves his post and gifts, it cheers him up when he’s having a rough time, thank you all so much. Yesterday I received a gift from Post Pals, what a surprise, some yummy chocolates and a scarf which I’m going to enjoy tonight after a bath when Harry is in bed. Thank you all.

Update 1st October 2013

Harry continues to be troubled with infections and viruses but is having a break from Immunoglobulins. He has daily injections of Growth Hormone treatment and has lots of daily medicines but still continues to smile.

We have seen genetics and he has recently been diagnosed with Uniparental Disomy on Chromosome 1. This is very rare and not much is known about it but genetics say this is why Harry is troubled with his immune deficiency ADGH ASD and Growth Hormone deficiency and also hyper mobility.

Due to his hyper mobility he has been in a lot of pain and has now got to use a wheelchair for pain management. Harry continues to solider on though and is a happy boy and copes so well with everything.

His hobbies are football, he loves Man United, and he also loves outdoor activities. We have recently bought a tent and have had a few camping trips which was great fun.

Thank you for all your post as it makes him happy.

Update 16th March 2012

I’m sorry Harry’s story has not been updated but we have had a rough time as a family over the last nine months. I would like to thank everyone who has written and sent gifts to Harry as they really do cheer him up.

He loves his Dottie teddy and he takes it to bed with him every night. Whenever I am giving Harry his treatment or if he is in hospital, Dottie teddy always has to be by his side for a cuddle!

Usually summer time is better for Harry as there are fewer bugs for him to catch but last summer Harry was ill with shingles, having it three times by November. This meant quite a few stays in hospital.

Due to the gene defect Harry has, he has failed to gain weight and grow, so we started daily growth hormone injections at the end of last year. It was really hard for Harry having to have yet another daily treatment but they did help.

In February, Harry’s consultant asked us to meet with another consultant specialising in genetic disorders. The outcome of the meeting was that they think Harry could have a rare genetic disorder called Cartilage-hair Hypoplasia and we are now waiting for the results of the testing. In the meantime, the growth hormone injections have been stopped because they can cause tumours in children with Cartilage-hair Hypoplasia.

Harry continues to have immunoglobulin therapy in hospital every three weeks and he has just been discharged following his 4th stay in hospital in the last four weeks due to a strep throat infection. We are hoping to stay at home for a bit now.

Update 1st June 2011

Harry is unwell and in hospital now with a non-blanching rash. He’s so fed up.

Story written 2010

Holly was born fine but when she was 8 weeks old she suffered a series of respiratory arrests and ended up on a life support machine for 3 weeks. The doctors then decided that it would be best to turn Holly’s machine off as there was nothing else they could do for her and her chance of surviving was nil, so we had Holly christened and everyone came in to say their goodbyes. Then we turned Holly’s machine off and for the next 24 hours she battled her way through and the next thing a miracle happened and Holly opened her eyes. That was the sign she gave us to tell us that she was prepared to fight and who were we to argue with her. The doctors told us that Holly would not live for very long as she had been left with cerebral palsy, epilepsy, chronic lung disease and oxygen dependent. She had to have a tube fitted in her stomach so she could be fed and she had a visual impairment, but if Holly was prepared to fight then so were we to make sure she lived a very fulfilled and happy life for as long as she was with us.

Over the next few years Holly spent a lot of time in hospital and on many of those occasions she ended up on a life support machine in intensive care. This was due to many things but the most frequent was a chest infection that would very rapidly develop into pneumonia for her. On every occasion we were told that the outcome was very bleak but what the doctors didn’t realise is that Holly is a very brave and strong little girl who has a passion for life and is determined not to let anything beat her.

In the last 12 months, Holly’s breathing started to deteriorate and for many months we were going back and forth to the hospital to see if they could help Holly, but every time we tried a new medication there was no success, so Holly got to a point where she could not go on like that any longer. The doctors told us that she would have to have a tracheostomy fitted as there was no other option, so they took Holly down to theatre and inserted a tube into her throat to help her breathe, and as usual, Holly came round from the operation with a glint in her eyes.

Now it’s like she has been given a new lease of life as she can breathe a lot easier. Holly has a lot to go through each day and she has a lot of epileptic fits every day, amongst other things, but she never complains and she is the most inspiring and brave person I will ever meet. Holly doesn’t get a lot of opportunities to socialise or make lots of friends which is why I think Holly will love receiving post and having it read to her and also being able to make lots of new friends.

Update 14th March 2020

Our beautiful Hol decided that she was ready to go to sleep forever tonight. We always told her she was in charge and when she was tired it was ok. She was our whole world and more and our heart’s feel like they have been smashed into a million pieces. She made such an impact on this world which will last forever and I’m so lucky that she picked us to be by her side for the amazing 18 years that we had together. You are and always will be loved beyond the stars and the moon my Holly doll.

Update 1st October 2019

Holly is still having a turbulent year unfortunately. She is battling daily constant seizure activity that is proving very difficult to control. This is having a major impact on everything for her at the minute. She’s unable to attend school or go to all her usual social activities as easily as she used to be able too. 

She’s just spent some time in hospital where they carried out lots of tests on her brain, so we are just awaiting the results to try and put a better plan in place to help her have a better time. 

Ruby started her new school on the 9th September the same day Holly had to go into hospital, which was a bit rubbish for her but she never moaned in fact she just says don’t worry mum it’s fine.I’m so glad she can be so mature and grown up when we need her to. 

She’s loving seniors and has loved being able to try out Trumpet lessons in music, much to my dismay, ha ha. 

She is still loving girl guides and looking forward to going to camp again even though she got hit by storms at the  last one, ha ha. 

Thank you for supporting my girls continually, it means the world to know that people care and we really do appreciate every piece of post we receive. 

Update 9th September 2018

So sorry for being a little late on our updates, life has been so so rubbish this year. As you all know Hols was taken into hospital in January and we are still trying to get out the other side. The last update I think I told you about Hols kidney stones and that it was horrific. The pain she was in was so bad she had to have breathing support and for us as a family it was heartbreaking to see her suffering day in day out for so long. While I battled away with everyone and anyone that would listen to me to get them to hurry the operation up. In the 16 wonderful years of looking after Hol this has had to be one of the biggest challenges I’ve faced and as a family it’s tested us to the limit. We had the operation and they removed all the kidney stones in both kidneys, but while doing the operation they broke both her legs so not only did she leave hospital with clear kidneys and trauma to deal with, but also a pink and purple full leg casts. We have been working very closely with the palliative care team, as Holly has been so poorly over the summer and everyone has been really concerned, as she’s needing lots and lots of strong painkillers and various other medicines to try and keep her balanced.

How things stand at the minute, we are still very concerned about her and we are still nowhere near back to getting Hol near to where she was before we went in hospital in January, but we are praying every day for our little miracle to arrive and take all this pain away that she’s in. We are heading to another meeting first thing tomorrow to discuss Hol again with the neurologists and the respirator team to see if we can help her anymore than what we are doing. Ruby has been a superstar throughout all of this, even though we got home for the summer, we had to cancel all our summer plans and our holiday that we had desperately been looking forward to, as Holly has been too ill to leave the house. She’s so mature and I’ve got to say I couldn’t be any prouder of the two of them and how they have coped, dealing with everything this year. I’m so sorry I’ve not been posting many updates,it’s because life has been so rubbish, so I’m hoping things are going to become more stable for us as a family very soon and I’ll have some happy posts and pictures to update you all on. Thank you for supporting the girls it really does lift us all xxxxxxxxxxxxxxxxx.

Update 2nd October 2017

Holly is heading for her sweet 16th birthday in December and its getting very exciting. She has had a busy summer, she went off to an international guide camp in Leicester and camped with all her friends, which is always a challenge for us, but she gets so much out of it, it makes it all worth it.

She had a few episodes of fractures over the summer as her osteoporosis continues to get worse. She also is having lots of problems with her bowels and we have had to have a few emergency meetings with the palliative care team.

She also had a great week away in the summer to Bendrig Lodge in the Lake District,where we managed to do lots of fun activities as a family, including sailing and climbing and caving. These times are so precious when we can all do activities together.

Ruby is super excited at the minute, as its her big 10th birthday  on 26th October and we are planning a neon disco party.

She has also been super busy with us over the summer, but also continues to be a great help to us over such a busy time of year.

She had a bit of a run in with a basketball over the weekend and dislocated and broke one of her fingers!!!! She was super brave.

Update 6th May 2017

Holly has had a busy month with lots of hospital visits with the ongoing problems with her bowel!!
She’s also had to start a new medicine that is giving her some rubbish side effects, but she really needs the medicine so we are a bit stuck.
The girls had amazing post over Easter and this month and the letters that arrive are so lovely to hear how everyone else is getting on.
We’ve all just done a run for Holly’s hospice today which was lots of fun and Holly got a lovely medal.
We are getting super excited for the Post Pals party now and can’t wait to see everyone again.
Sending you all lots of love.

Update 2nd October 2016

I really don’t know where to start with this update we have just had the most amazing time in Chessington World of Adventures with Post Pals. We’ve done lots of fun activities like cuddling a panda bear, to meeting Rapunzel at dinner and of course Ruby loved all the rides, I think the cobra was her favourite.
With lots of help from the Post Pals team we even managed to get Holly on the princess carriage ride which was so special as Holly doesn’t get to go on rides.
While away, Holly was struggling a little bit with lots of nasty seizures but we didn’t let that spoil her fun.

Over the last few months Hol has been struggling more and more with her bowel and bladder and they want to do surgery in a couple of weeks!! We are very scared as every time she goes under general anaesthetic it’s very dangerous for her as her lungs are so weak now.

Thank you to everyone that’s been sending lovely post through to the girls this month. Ruby has been quite poorly too, spending some time in and out if hospital due to her getting salmonella and she’s still recovering now.

As always we are so grateful to you all for the love and thoughtfulness you show to the girls, so massive thanks and lots of love from us all.

Update 22nd August 2016

Holly has had lots of hospital appointments as her bowel and bladder have more or less stopped working very well and the specialists want to do surgery very soon to fit a colostomy and a permanent catheter to help fix the problems.But it’s really dangerous every time Holly goes under anaesthetic, so I’m finding it difficult to agree a date at the minute, as I’m feeling quite scared about it all.

We made it to guide camp with Hol in July, but had to cut it short and rush her back to hospital as she came down with a chest infection and has not been great, as her lung capacity is so tiny so she struggles to maintain herself.

Thankfully after a few weeks hard work and lots of determination from Hol we are through to the other side and can start enjoying the summer holidays.

We have come down to Devon for a little break and I’ve got to say the girls are loving every minute of it, but it’s very hilly, so mine and Gary’s back is not enjoying all the pushing up and down. Haha.

Anyway, massive thanks guys for keeping my girls’ spirits up and always making then smile. As always, we really appreciate that you think of us.

Happy holidays everyone. I hope the sun is shining for you all.

Update 6th April 2016

Hi guys,

Hope you all had a great Easter.

Holly has been having another tough month, as she has got another broken knee.

Unfortunately her osteoporosis has become more and more of a problem for her over the last month. We are waiting to go into hospital next week for a special scan, to see how many fractures she has got at the minute, all over her body.

We had a nice time at Easter and we got out and about on Good Friday, but Holly was very cold and couldn’t leave the house for the rest of the weekend, as her temperature was dangerously low.

We had a fun time yesterday though, as I took Holly and Ruby to their first ever book signing.

Ruby loves reading and Holly loves listening, so it’s a great combination ha ha.We went to meet Holly Smale yesterday and she signed their books, so they are on a mission now to get David Walliams to sign there books, as they love reading them.

Anyway hope you all have a great month lots of love from all of us xxx

Update 24th January 2016

Hi everyone,

Happy New Year!

Well we had an eventful Christmas, as Holly had a broken knee and was in a cast from the top of her leg down to her toes.

It happened as we transferred her from her chair to the bed, and she has now been diagnosed with brittle bone, from the results of the x-rays and scans.So we are just waiting to see a specialist about her starting a new treatment, to make her bones stronger.

She was delighted that Father Christmas delivered her a new Disney Princess charm for her Pandora bracelet and a portable music system so she can listen to music and enjoy all her  favourites like Little Mix and Megan Traynor with Ruby.

Ruby was so delighted with the whole of Christmas and she was so excited to keep receiving  her elf post and couldn’t wait to take each new letter to school, to read to her class.

All Ruby wanted was the David Walliams book collection, as she is a massive fan of his now and loves reading, so she’s started collecting the fairy books now too and the horrible history books.

We were over the moon with  the beautiful cards we received in the run up to Christmas and we can’t thank you all enough.

Holly is desperately trying to stay warm as we get through January. Ruby is a little nervous, but very excited to be going on her first Brownie camp next weekend.

Holly has been too sick to get to get Guides lately, so she had a lovely surprise the other night when the Guides turned up at our house to do a Guide badge, with Meg which was so much fun.

As always thanks for thinking of us, and being by our side and making our girls smile all the time, lots of love from all the Smallmans xxx

Update 2nd December 2015

Happy December! We have had a busy couple of months; Ruby won a well child award and she was invited down to London to meet Prince Harry! However, the day before we were due to leave Holly took ill, so it was touch and go if the hospital were going to let Holly travel. I decided to find a way and so we spoke to a doctor who helped us get a portable device, so that we could give Holly IV medicine on the go!!!
We are so glad we all got to go to the awards, as it was an amazing experience and Prince Harry was so lovely.He sent the girls a letter after we got home, to say how much he appreciated the gift that Ruby had made him.
We eventually got over that chest infection, but Holly is having major issues of pain in her bowel and also not being able to control her temperature. So it is proving difficult to get out and about with her, but every good opportunity we get, we are off.
We loved receiving our popcorn pan from Candy Chaos, it was so much fun and we really enjoyed doing it all together.
The girls have received some beautiful post from all you very kind people, so thank thank thank you so much for thinking of them.
We are just heading into December and the girls are very excited that Father Christmas will be heading our way soon and I’m just praying that we can stay out of hospital for it.
We are busy planning Holly’s birthday this week and as her special present I took her to Lapland UK, as I’ve always wanted to take her to Lapland and I’ve got to say it was so magical and she loved it.
Holly will be 14 this week, which is such a massive milestone for Holly, as they said she wouldn’t reach her first birthday.Also being so poorly the last year it feels really emotional, but we are so so thankful.
The girls are busy making lists for Santa and hoping they are on the good list ha ha!!
Merry Christmas everyone, we hope you all have a very healthy, happy time and thank you for thinking of us all year round xxx
Lots of love Holly and Ruby Smallman

Update 13th October 2015

We have been so busy since our last update it seems like life never wants to slow down. We had a great summer and enjoyed some time while Holly was well enough to travel, the best bit being that we travelled over to Disneyland in Paris and it was the best week ever. The girls had such a magical time, they really enjoyed meeting the princesses and they were delighted when Prince Charming came out of the parade to give them a kiss.

Amazingly Holly must have been so happy to be at Disney, her oxygen levels reached 100% for the first time in months.

Holly has been battling another chest infection which developed from catching a cold.She has had a difficult couple of weeks, but we have managed to care for her at home with the help of our acute response team.

We were delighted to receive a letter a little while ago to tell us that Ruby had won the WellChilds Nation award for most caring female, for all the help she gives  to her big sister.

We are so proud of her and the best bit is that we are all off to London next week, where Ruby will receive her award and she also gets to meet and spend time with Prince Harry!! To say she is excited would be an understatement!!!!!!

Thank you all for your post and lovely parcels that the girls have received, someone sent us a beautiful H and R decoration, which the girls have put in their bedroom.

We really appreciate all your time and thoughtfulness that you show to us all the time and are so grateful for everything.

Can’t wait till next month to share all our pictures of when Ruby met Harry ha ha xxxxxxxxxxxxx

Update 5th August 2015

I’m so happy to be posting that Holly has had a good couple of weeks and that means she has been able to start living again.

It all started with the amazing Post Pals party, which is certainly a highlight of our year. I can never get over how everyone is thought of so individually, no matter what their abilities. They have something for every child there, it really is a day that dreams are made from and of course this year the fabulous Jamie was there with his candy! Oh my goodness, I couldn’t believe my eyes when I saw it all!

What Holly didn’t know was that after the week of the party we had planned a surprise trip to Disney for her. This was because she had been so ill. However, the week before we were due to go she took ill again, so I was really nervous about it. Thankfully she improved enough for us to go in the end though.

The trip was so magical from start to finish and we were amazed how well Holly responded to the trip. Holly and Ruby had a lovely time and got dressed up as princesses and went for dinner.

Just after we returned home, we had a call to say Holly’s bone marrow isn’t producing white blood cells at the minute that fight off infection, so we are busy sorting that out at the moment.

We hope you are all enjoying some sunshine at the moment. Love to you all and as ever, thank you for always thinking about us xxxxx

Update 3rd May 2015

Holly has been having a turbulent couple of months. She has lost the ability to control her own temperature which is causing lots of problems and also stopping her from leaving the house a lot of the time as it is cold outside!

She has also been having lots of problems keeping her oxygen levels up and needing more support, so we had meeting with the palliative care team and our hospice this week and were told that they think there has been a deterioration in her ability to breathe by herself! Not the greatest news and also a very worrying time for us as we don’t fully understand the consequences of this yet.

She hasn’t been able to go to school for nearly a year now which is really sad as she loves mixing with all her friends and doing lots of fun stuff.

I’m currently trying to arrange a surprise to take her to Disney in Paris, so I’m very excited to get that all organised, but it’s very difficult with oxygen plus insurance. Hopefully we will get there with it all soon.

Holly is spending most of her weeks at hospital appointments at the minute, so it’s lovely for her to receive all the lovely post and letters and cards, as it gives us something else to focus on.

Ruby has been doing lots of work at school lately as she’s got her sats tests coming up, but she really has no idea what they are so she’s not stressed about them at all!

I’m sorry my updates aren’t as happy as they usually are, it is just that I’m finding it really hard to be so positive lately with all these tests coming up this week.

Lots of love to you all and thank you so much for being so kind and lovely to my family xxxxxx

Update 30th Novemer 2014

Things are still very hectic here and Holly is still having lots of problems due to her being so ill in hospital recently. It has had a major effect on her, we are struggling to control her temperature as she keeps dropping to hyperthermia levels, plus her oxygen sats are very temperamental too. We have had to have a meeting with the doctors this week as they are concerned about the signs she is showing, they think the right side of her heart has been left a little bit damaged from all the infection in and around her lungs as she is having problems clearing her fluids. We are very unsure at the minute whether this is how Holly is going to be now or if we are still feeling the after effects of her recent admission. She is an amazing little superstar and is battling through as she always does.

It’s Holly’s birthday next Saturday and she will become a teenager which is a very important day for us all. However, with everything that’s been going on I haven’t had a chance to arrange a party or anything so I’m hoping to organise something nice for her this week.

Ruby has been back to hospital for her MRI scan so we just have to wait for the results now.

The girls are super excited for Santa coming. I’m sorry for the lack of posts with our thanks for all our amazing post and special gifts, as they really do brighten our days and we are truly grateful to you all.

I’m hoping that my next up date will be a lot more positive. We hope you all have an amazing Christmas, lots of love from us all xxxxxxxxxxxx

Update 29th October 2014

Just a quick update as life has been really hectic lately. Holly has been very ill and was rushed into hospital 3 weeks ago. When we got there we realised she had hypothermia, double pheumonia, plus a fluid infection around the lungs and septaceimia, so she was put on Cpap and it has been a very worrying time for us all.

The doctors said they thought we might not bring her home this time as she was so poorly but thankfully with lots of hard work from the wonderful team at Alder Hey and the amazing Holly herself, she turned a corner. She is still not close to being herself and it’s going to take lots of TLC to get her right.

Ruby was very upset by the whole situation and was finding it all hard to deal with, then all of a sudden she took ill herself and was also admitted to hospital with a very nasty water infection and had to be catheterised and put on IV antibiotics as she was in so much pain. This meant we had two daughters on two different wards which was very difficult for us, but thankfully Josh is fully Trachi trained and he floated between both girls so that me and Gary could do shift changes between the girls.

It’s been a very hectic month for us and to say we are all feeling exhausted is an understatement, but hopefully next month we will have a much more positive update. Fingers crossed xxxx

Update 28th August 2014

Holly is having a really bad time at the minute! Her epilepsy has become uncontrollable and she’s having lots of different medicine changes to try and settle her down. We are hoping to see some improvement very soon.

She’s got lots of important hospital visits coming up this week and next, as she’s got to go and see a bowel surgeon and someone about her upper limbs as her scoliosis seems to have got worse.
She had an amazing time at Guide Camp and it’s something I don’t think we will ever forget. She joined in with lots of new activities, she went on a kata canoe with all her friend which was great fun and she also was one of the first Guides to complete her challenge badge. She took part in flag down with people from all over the world which was amazing and she went to a disco! I think she quite liked all the dancing with her friends!

Thank you for all the post we have received from everyone I’m sorry my updates aren’t as often as I’d like.

Ruby is very excited to be going back into Year 2 in school next week and is very excited to be with her new teacher. Josh has had a very exciting time lately as he went for an audition and he has started filming for a part in a show on CBBC called The Four O’clock Club, so I’ll let you know when he’s going to be on!

Update 2nd August 2014

Hi everyone, well our household has been very busy and hectic over the last couple of months!

Holly has been having lots of problems with her bowel which is still on going and it’s causing her to be in lots of pain. We have started new medication but unfortunately it hasn’t worked so she has now been referred for an urgent referral to see the top bowel surgeon at Alder Hey.

Her epilepsy is causing her to have lots of problems too and we don’t seem to be able to get her seizures to settle, but we have been changing all her meds so hopefully we will see some improvement soon.

She has been working hard in school when she can get there and I had a great parents evening at the end of term where the teacher told me she’s top of the class so I’m a very proud mummy.

Holly is just about to embark on her next adventure – we are going to guide camp tomorrow with her guide unit and we are camping at Windsor Great Park!! Her unit are going for a week but Holly would never be able to cope with that so we are going for two nights and camping in a tent! Yes, that’s right, a tent! I have had to send quite a few emails to get us sorted as I don’t think they know or understand how much equipment Hol is going to turn up with! She never travels lightly! It’s all very exciting though as I never thought I would see the day she would go camping with her friends, but I’m also very scared! I’m sure we are going to love our new adventure though.

Ruby is her usual bundle of energy and looking forward to her break from school so much! She had a go at horse riding last week and loved every second of it. She is also attending a multi sports summer camp which she is loving.

Josh turned 16 last week and so he will now be moving on from Post Pals but he wanted me to say a massive thank you for all the post he has reviewed over the years. The amount of smiles his post has created is endless and he appreciated each and every single one of them. He is going to college in September to pursue his love of acting so hopefully one day you may see him on the telly.

Anyway, I just want to say a massive thank you to you lovely, lovely, lovely people, that continually support us as a family all year round. We love our post as it brightens up our days. We are sending you all massive hugs and kisses and we hope you have an amazing summer!

Update 28th July 2014

Josh is now 16 and he would like to say thanks for his post over the years. Please continue to send post to Holly and Ruby.

Update 12th March 2014

Hi everyone I’m sorry for being so quiet lately, we seem to be spending more and more time at Alder Hey every week.

Holly has been having a rough time lately as her whole body seems to have gone out of sync, which we think is due to her age! She has been suffering lots with her Epilepsy so we have been trying different medicines to try and get the seizures under control. We have been having major problems with her bowel and bladder too which has resulted in us having to start catheterising her to empty her bladder and we are talking to bowel surgeons about the best management for Holly. She has also just started having botox injections into her muscles to help her move her limbs as the tone is becoming quite tight and her skin is breaking down in some areas.

All in all she has been having a rubbish time lately but I’m hoping with all the new management plans things will start to improve. It would help both her and all of us too, because it really does have an impact on all of the family, as I see us having less and less time every day for Josh and Ruby. Josh is doing his GCSEs at the minute so it is a really important time for him and I do wish there were a few more hours in the day so I could support him better.

I hope you are all well and thank you again from the bottom of my heart for every card letter or gift that arrives for my children. Holly and Ruby have so much fun together opening the post and Ruby feels like she is helping her big sister and they can have fun together.

Update 18th November 2013

Hi everyone! Sorry for the late update but life has been very hectic as usual in our household.

Holly’s chest became bad in August and it has taken her a long time to recover from it, she has had a few short trips to hospital as her breathing has really been affected by it all. Her respiratory team are a little concerned by it all now so she is going into hospital again tomorrow to have some in depth tests carried out on her breathing as they are unsure whether she may need some support to help her breathe. I’m hoping not as life is hard enough for her and us as a family with everything that we have to fit in a day, so to add something else will only make things harder. We are just waiting on some results from her bloods as she has been exhausted lately but we think it may just be the infection has taken it out of her.

She has managed a few fun things with her guide group though in-between all this, she had a fun sleepover with them all and then took part in a lovely remembrance day parade, it was so lovely to see her with all the other girls.

She’s getting excited now as it is her birthday in December so it is another major milestone in her life that we are so grateful to see every year it comes around.

Ruby has been very busy lately, it was her birthday and she turned 6 in October. She had the most fun with all her friends as we had a pop-star party which Holly loved too with all the music. She has developed a big love for Lego so she was thrilled to get some birthday money and off she went to buy herself a set from the Lego shop – it took at least an hour to decide! She said her best card was a One Direction card that had her picture on with the band and she’s stuck it right next to her bed.

Josh has been busy revising for his GCSEs lately so we are relieved that they are over for the time being. He has joined an acting class once a week and really enjoys going, he is hoping to go to college next year to study it but he has got to go through lots of auditions first so we are hoping it all goes well.

I’m so touched that even though I don’t get time to update as often as I should that you still don’t forget us. We are so grateful for your support and when that letter arrives and I get to read it to Hol and we forget all the other rubbish stuff we have going on some days, it is just fab. We can’t thank you all enough really and just as I’m writing this an elf package has just arrived addressed to Ruby and I know that her face will light up when she comes home from school. She just loves her magical Christmas letters and takes them all to school to show everyone.

Anyway sending you all lots of love and I promise to update with Holly’s results soon xxxxxxxx

Update 10th July 2013

Hi everyone, well I’ve had a bit of a up and down month. I’ve been having lots of problems with my bowels but my doctor has given me some new medicine to make that better and I am waiting to go and see a new doctor. I am visiting a new school at the minute as I go to senior school in September but I am a little bit worried and so is my mum and dad – I can just tell! I am liking the people though and I am looking forward to making new friends. The only thing I don’t like is the uniform, it is yellow and green and anyone who knows me will know that those two colours will clash terribly with my bright pink wheelchair.

I had such a lovely time at the Post Pals party it was so much fun and again singing hands were amazing!!! Me and my mum love the picture that the lady drew of me and my sister too, my mum has put them up as she loves them that much. I love getting to meet all the lovely people who are so kind to me all year round as we as a family get to say thank you to them all in person.

I had a lovely hand made card off Kevin this month which is so clever and every time he sends me one we can’t wait to open it up to see what it will be. Also, Kim and Stevie sent me some lovely post this month.

I’ve had a bad week as I’ve got blisters coming out on my skin and I’ve not been feeling too good, so we have been at the hospital all week, but my bloods have just come back today and they show that there is some infection in there so hopefully I’ll be on the mend very soon.

I am running my own night in my guide group this week so it is called ‘all about me’ and I am doing a sensory quiz for all the girls and then they are watching a DVD about my life and then they are going to be writing cards to some of the Pals. I am going to  tell them all about Post Pals so I’ll let you all know next time how I get on.

Josh and Ruby have just got their school reports and my mum and dad are really happy with them. Josh got an A in his dance exam and Ruby got an award for being the best teachers helper.

I just want to finish by saying a massive thank you to Viks and Kate and all the volunteers that work so hard all year looking after us special girls and boys you truly are AMAZING and I am so glad that you are my friends!!!

Take care and have a good month enjoying the sun, lots of love Holly xxxxxx

Update 16th April 2013

Hi everyone! So sorry for my lack of updates latley! Life seems to roll by so quickly and you don’t realise some days.

In the last update i was telling you about Holly’s pain problems that she had developed, so we put a plan together with the Palliative Care team and thankfully the medicine seems to be working by suppressing her brain over night which is stopping all her organs going into spasm, which was causing the pain.

Holly has just become a member of her local Guide Group and i’ve got to say it is one of the most positive things that has happened to her as before she had no real opportunity to make friends or join in socially with children her own age. I’ve got to say it was possibly one of the most nerve wracking things i’ve done walking in on the first night with her, as i was so worried if anyone would speak to her or want to be her friend or how she would fit in, but the girls are the nicest group of girls i could have wished for as they have made us feel very welcome and the best thing is that Holly has made friends.

We have been battling with all the cold weather lately as it is so hard for Holly to breathe when it is so cold, so we have to keep her indoors wrapped up well, but thankfully we get post to read from all you lovely people which brightens our day.

Holly’s health has been quite steady over the last couple of months but each day is different for her. She’s having some problems with her gums at the moment because one of her epilepsy medicines is making them grow abnormally causing her hair to fall out in parts, but she needs it to control her seizures so it is a bit of a catch 22 situation.

Josh is still busy being a typical teenager, he seems to love his computer rather than talking to me, but i’m under the impression that it is quite normal for his age!! He has had a bit of a rough period in school in the last couple of weeks as a group of bullies decided to target him and they attacked him in the school yard and he had to go to hospital as they were very vicious. Thankfully he is ok now but as the bruises heal i still find it very hard to understand how other human beings can be so cruel.

He has just started his Duke of Edinburgh award with school and is very excited about his first expedition this weekend in the Lake District but not so sure he fully understands how hard its going to be doing a 10 mile hike with his kit on his back, but i know he will love it!

He is also still very much involved with the comedy trust in Liverpool and has just helped them secure some funding from the British Heritage Trust to run some comedy workshops in Liverpool which is very exciting.

Ruby is growing up so fast and is wanting to do more and more to help to look after her big sister day by day. She spent an hour the other day talking to Holly and teaching her to say her name by breathing a certain way, it was very sweet to watch.

She is turning out to be a very creative little girl, any spare minute she has she wants to glue, stick, cut out, make, draw and create. My house is like an art gallery and i’m not allowed to throw out anything in the recycling bin as she says that ‘ mum, it could be made into a car or a swimming pool for my dolls’!!

She has a new found interest in Lego which she seems to be really enjoying at the minute. She had been saving up for a spongebob squarepants Lego set from the Lego shop and she finally had enough last week after Easter and so she was thrilled to be able to go to town to the Lego shop. I must say it takes a while to get out of there though as she is busy eyeing up the next piece, which is now a swimming pool with a slide set!!

Anyway, thank you all for your continued support to us as a family, it always touches my heart every time i read a letter or card to Holly as i know that other people care. To know you all take time out of your lives to make my children smile is just so lovely and we are very very grateful to each and every one of you!

Update 26th March 2012

I’m so sorry for my lack of update lately, my health has not been very good over the last couple of months and I’ve been finding it hard to keep on top of everything! I’m hoping that things are on the up now as I’ve started with lots of new medicine so fingers crossed.

Holly has had quite a good few months with her chest, she has only had a few chest problems but she is having increasing problems with her bowels and also her epilepsy has suddenly gone a little worse, so we are increasing her medication and are hoping this helps! Apart from that we have been trying to get Holly out of the house a little more lately as the weather is warming up a little. We took Holly and Ruby to see the new Muppets movie which they both loved – Ruby was dancing in the aisles and Holly’s eyes were moving everywhere as I think she loved all the music. Over the weekend it was really sunny in Liverpool which makes it easier for Holly to breathe so we took her and Ruby to see Disney on Ice in the Echo arena and they both dressed up in their princess dresses. I face painted flowers on their faces and we also added lots of glitter which was fun and they both looked like the belle of the ball and thoroughly enjoyed the show.

Ruby is very excited for Easter at the minute, she keeps asking me how many sleeps until the Easter bunny comes. She has just learnt how to write her own name and Josh and Holly so she is really enjoying practicing her writing skills and is drawing pictures all the time of her family. She has just started bringing a reading book home from Nursery which has ignited a big love for reading and trying to recognise letters, so when she received her books from Post Pals this month she was over the moon and has taken them everywhere with her to show everyone. She is also desperately trying to find a way to get to Peppa Pig land where Dottie has been as she was astounded that Dottie had met Peppa.

Josh has been really busy with lots of school work lately as he is just picking his options and really can’t decide what he wants to be when he grows up. After some thought he suggested he might like to become a zoo keeper, to which me and his dad chuckled a little, but thankfully I think that phase has passed now. He has also been busy with his comedy and has been performing for charity events and gaining lots of experience.

Things have been quite tough for me over the last couple of months as I seem to be constantly battling the system to get what is needed for Holly’s care, so when a parcel or a card arrives in the post it is such a welcome distraction from what can sometimes be quite a dark day. You all continue to put priceless smiles on my children’s faces and I am eternally grateful to each and every one of you. Thank you, thank you, thank you, for your continued support. Sending you all much love xxxxxxxxxxxxx

Update 10th November 2011

Hi everyone, I’m so sorry for my lack of updates. Holly is having (on average) two appointments a day, so tying to fit everything in is proving hard.

Holly’s had a stable time over the last couple of weeks and I think the fact that the weather is still quite mild for this time of year is helping. We always find the winter particularly nerve wracking and we find we just keep praying that her chest stays clear each day.

Ruby had a lovely birthday in October, she went to our local play centre with her friends and brother and sister for the afternoon, and then the highlight of the day was that she went to the build a bear shop. She got to build her own bear and buy him an outfit which she thought was amazing and strangely enough she has decided to call her new bear sausage roll ha-ha!

Josh has been really busy over the last couple of weeks as he has been filming his sky1 program with John Bishop which will be shown at Christmas. He had the most amazing time and met some lovely people so we are all really excited to see him on the television.

We have also done some filming for Children In Need this month regarding our local children hospice, Claire House, so that should be shown on the BBC on the night. I just hope they make me look a little younger and hide my bags from under my eyes ha-ha!

Holly will be 10 in December and its going to be such a monumental day for us all as we were told that Holly would never see her 2nd birthday, so for her to reach double figures is such a big deal. I’m busy trying to arrange a big birthday bash for Holly, its going to be a fancy dress party with a winter wonderland theme and I want Holly to be the belle of the ball for the day. I’m so excited as it gives me a big opportunity to show off my amazing daughter and tell everyone how proud I am of her and what she has achieved, so I’ll hopefully have lots to tell you next time i write.

As always, your kindness is never lost on our family as a whole. The Halloween bags went down a treat and Ruby is still scaring everyone with her spiders! Someone also sent the girls two bears to build and I must say it was a really enjoyable activity for us to do together. Thanks, as always, to Dominic who keeps us entertained with his antics! Ruby also received a present all the way from Stacey in the USA which was amazing!

Much love to you all xxxxxxxxx

Update 31st August 2011

Hello everyone, firstly can I say a massive sorry for my lack of updates, our life has been so hectic over the last couple of months and I don’t even know where to begin. Let’s start with Holly!

Well, after Holly having such a bad winter, she had to go in and have an operation to have a portacath fitted into her chest. This is so that the hospital has got immediate access into her veins so they can treat her quickly. That went well and as usual Holly seemed to breeze through in her amazing manor like she always does. It was a little harder for me to deal with at first as I didn’t like the line that sticks out in her neck and I also felt like it was something else which is always at risk of infection, so in turn puts Holly at risk.

We then had to start a big battle with everyone. As I’m sure many parents will agree, you have to fight for every bit of help you need and it started to take its toll on me which I have never let it do before, so I was finding it hard to write updates as well as just getting through the day. I’m feeling much better now though so I promise to keep up to date as much as I can.

Holly has had a mixed summer, some good weeks and some bad weeks, but in the whole we have managed to avoid hospital which is always a bonus. She got a lovely surprise as her family all clubbed together and bought Holly an IPad 2 with a pink cover, of course! We are still trying to work it out and learn about buying good applications for her for it. She has also got lots of her favourite films on there though which is great. We are just trying to find an arm that will hold the IPad and attach to her wheelchair so she can watch as she travels! She is such a princess but I must say Holly has been stuck in a lot over the summer.

The one thing that helps her to get through is all the wonderful post she receives – from letters, postcards, parcels; it is all so uplifting when it arrives and it brightens up her day. I’m still astounded by people’s kindness and the fact that they take the time to care. You are all such special people and we treasure everything that Holly receives.

Ruby seems to have grown up a bit over the summer as she never stops chatting and she is always on the go, which is really lovely for Holly as she always includes her. She is in love with everything Scooby Doo and Cars 2 at the moment so poor Holly has to give her a ride around the living room on her chair and pretend she is the mystery machine. She is just about to go back and do her second year at nursery so she is very excited as she will be one of the big girls this year.

Josh has also been very busy over the summer as he entered a competition to become Liverpool’s Young Stand Up Comedian of the year and out of 250 children HE WON hooray!!! This was a massive achievement and so now he is doing some performances to help out people and gain more experience, but he’s been interviewed by our local radio stations and also appeared in the local press which has been very exciting for him, so maybe one day he will be following in John Bishop’s shoes!! He has also been keeping up his drumming and has done well with that.

We are trying to have some days out this week as a family all together but the weather is not too great in Liverpool so we’ve got our fingers crossed that it brightens up soon and we manage to get out all together and do some fun stuff.

Anyway, I hope you are all well and I wanted you to know we really do APPRECIATE all the post that lands on our doorstep, I just wish I had the time to write you all replies, but unfortunately my days are so full with medicines and feeds and changing as well as trying to see to Josh and Ruby. There are just not enough hours in the day. Sending you all lots of love and see you all next month xxxxxxxxxxxxxxx

Update 23rd March 2011

Hi everyone Holly had surgery yesterday (had a port put in) and came out of the operation well. She has coped well with the surgery but has come down with a chest infection over night so she’s now trying to fight that off with ivs for the next two weeks.

Update 11th March 2011

Well, what can I say about this month? I have spent most of it at home as I have not been strong enough to go out yet. My chicken pox have left lots of marks all over my body so I’m hoping they fade soon.

My poor brother and sister have been ill as well this month with throat and ear infections which hasn’t been very nice for them. I am at home at the moment having lots of different medication to try and get rid of MSRA. This is because I’m going into hospital on the 22nd of March to have an operation. I need to have a line put in my chest so they can get medicine into me more easily, as all of my veins are not very good at the minute. I’m not looking forward to the op but my mum and dad said it won’t hurt once it is done, so fingers crossed everyone.

My dad had a nice birthday this month. We made him a cake which my mum tried her best with, but it wasn’t as good as my dad’s cakes haha!

Holly has received some fabulous post this month. A card came all the way from Betty in Australia, we had a lovely postcard from Liz with a picture on so we could see where she lives, a lovely cat card from Jenny, and then all the children received some wonderful personalized Valentine cards! Scott also included some Valentine chocolate which went down really well. Dominic has been really busy again this month with lots of tales and he sent some lovely Winnie the Pooh tea towels. Dottie also sent me a great letter telling us about her passport so we can’t wait to see where she ends up. Jenny sent me a lovely letter with a picture of her Dragon in ‚Äì oh my goodness, Josh loved it and he also thought the paper he received his letter on from Jenny was very cool.

How lucky have we been this month as Ruby and I received some lovely teddy bears at the beginning of the month from Jane. Josh was so happy with his camera and photo album from Jillian Malcolm and Angus too and he has decided to save it for a family day out when it gets warmer and Holly can go out again. I’ll post some pictures when he’s done it. Ruby has been very happy at bath time this month as she received some rubber ducks from Jooles, Emily and Daisy. Holly also received a great height chart and some stickers, but unfortunately Holly was taller than the chart, but we had great fun trying to lie it next to her! Penny, I promise to try and grow a big pumpkin. Also, Adam and his mum Lesley sent us some seeds and a lovely foil scratching picture that my dad has been helping me do. The noise and feel is quite funny but it goes through my mum! I also have some different coloured nails this month thanks to Melanie who kindly sent me some new ones and last but not least, I was so surprised to receive a signed postcard from Gordon Ramsey – oh my goodness how fab! Thank you so much Jenny. Also, Ruby and I have made some great badges and my Japanese bookmark is fabulous. Finally, we received another card and stickers from Sophie from Holland – Josh was so happy with AJAX stickers.

Anyway, thank you to everyone for thinking of me again this month, as when I am stuck in the house all the time it really brightens my day to receive post. I’ll speak to you all again soon when I’ll have my new line. Take care everyone, love Holly xxxx

Update 5th February 2011

Hello everyone, well not much to tell you about this month as I have been too ill to do anything. My chest didn’t seem to get any better from before Christmas and then a couple of weeks ago I broke out in chicken pox (for the second time). At first it wasn’t too bad except I was really spotty (I looked like Dottie the Dalmatian haha!) but then I became very ill very quickly so my mum and dad rushed me to hospital in an ambulance again and when we got there the doctor discovered that I had pneumonia again. This time my right lung had collapsed with it and by this time I was vomiting and not feeling very well at all. I was struggling to breathe which isn’t very nice so the doctors said I needed to get a line in quickly so they could get some medicine into me, but the only problem with that is my veins are damaged from all the treatment I have had before so it was very difficult. After 8 attempts and some very sore arms, legs, hands and feet, they finally got one in.

The next day was just as hard as I had not been to sleep for a couple of nights so I was feeling very tired and everything was becoming very hard. The doctors came in to see my mum and dad and they were not very positive about me getting better, so my mum sent them away and said that they had no choice but to make me better. That was a very sad day as my mum was crying all day because she was worried and then when Josh came up to visit me after school he was very sad as well so I decided to get some sleep that night and I think that helped me, as after a couple of days and with lots of medicine and lots of physio, I started to breathe a little easier and I could see my mum smiling again, which is always a good sign. My mum and dad asked the hospital if they could bring me home with my line in and look after me at home with the help of the outreach nurses and my chest doctors said yes, as they know I like my own bed much better than the hospital ones as they are a little uncomfortable.

So we are home now and slowly but surely I’m starting to feel a bit stronger each day. My consultants think it will take at least 6 weeks for my lung to repair itself so I’m still on lots of different medicine to protect it, but at least I’m at home. My mum and dad keep telling me that I’m a good girl for sharing all the time and I didn’t know what they meant and then they told me that Ruby had caught my chicken pox, so now we are both spotty but at least I know how to share!

Anyway I hope you have all had a nice January and I’m really hopeful that February will be much better, as it is my dads birthday so I’ve got to start planning his cake. Unfortunately my mum isn’t as good at cakes as my dad but I can’t ask him to help haha!

Thank you this month to Claire for your lovely hand made get well card that must have taken you so much time, I loved the design it is so girlie and pretty. I also received a fabulous postcard all the way from Florida from Liz and hearing about her adventures brought lots of happy memories back for me and my mum when we were reading it. We just hope we get to go back to meet Mickey again one day. I loved my pink spotty card that came all the way from Scotland as well, it’s my favourite colour as you know, I do hope you got your biscuits made in the end Tyrie. Dominic your letters are brilliant – me and my family love listening to your adventures and thank you so much for your gifts that come along as well, we all loved our surprises, thank you. As always, Dottie’s letters make us smile, but I think the snow angel is my favourite. Jenny, I’ve been thinking about your nails for your wedding and me and my mum think a nice French manicure would look lovely on your big day. Thanks for all your lovely words over the last month and showing such care to me, we hope you and Ben are still having lots of fun and my mum can’t quite believe how many animals you have. I love my music cd that Terry made for me too, thank you so much; it is great listening to it with my lights on. Penny, thank you so much for the paper mache pig, me and Ruby are going to enjoy getting messy with that as soon as I feel up to it.
Thing have been very bleak this month and some days are harder than others, so when you receive bad news about your child lying there and you know that things are completely out of your control, it is the worst feeling in the world for a parent. Thank you to everyone who sent get well wishes to Holly this past month it has been so hard and when I receive a wish message to know that someone out there cares and is willing her to get better as well, it is just the tonic you need. Joshua and Ruby have just as hard a time when Holly is in hospital as they are passed from pillow to post and not knowing when they are going to see their mum and dad next is really difficult, so when they receive some post and it lifts their day, it is so lovely to see. Thank you again this month for helping to make a very bleak month in our life a lot brighter.

Update 22nd January 2011

Things have been really bad here and we had to call an ambulance on Tuesday. Holly has got bad pneumonia from the chicken pox and her right lung has collapsed. They said on Wednesday that she might not make it, but thankfully she has done what she normally does and turned it all around on Friday. She seems to have turned a corner thank goodness.

Anyway, I’ll keep you posted how it’s going. It’s been really traumatic for Josh as well this week as he understands what’s happening so he’s been really worried and asked me to promise not to let anything happen to her. So we are hoping for a better week next week all round.

Update 14th January 2011

Holly has broken out in chicken pox tonight!

Update 13th January 2011

Happy New Year everyone! Well what a month I have had since we last spoke. It was my birthday on the 6th December and my mum and dad had arranged for a pony to come to my house with a carriage and I was going to put glitter all over the pony and carriage and then I was going to be wheeled on in my wheelchair and taken for a ride just like a princess. But guess what? It snowed and the party people couldn’t get here so my mum was really upset for me but she quickly put plan B into action and arranged for a lovely lady called Polly to come to my house and do a make over on me and my friends which was lovely. We all had hand and foot massages and we got our nails done and then we finished off with a bit of wheelchair dancing. I had a lovely day and really enjoyed myself but I started to not feel too well as the day went on.

By the next morning I was not feeling too great at all so my mum and dad had to phone an ambulance and I was taken into hospital. It turned out I had pneumonia so the doctors put lots of lines in me and started giving me some medicine to make me better. The next couple of weeks were really hard as my breathing was not very good at all and I needed medicine and special massage on my chest and also special nebulizers all the time to help me breathe. My mum and dad asked the doctors if they could bring me home and look after me at home so they said yes and we had some lovely nurses coming out every couple of hours to give me iv medicine and to check I was ok. It was very hard for Ruby and Josh because my mum and dad were doing everything for me so we couldn’t really go out or do anything, but they never complain.

I started to feel a little better just before Christmas but then on Christmas Eve I was not good again so we had to call the nurses back and it all started again. I slept for most of Christmas day but when I woke up I was so excited because Santa had been and left me lots of surprises which Ruby was desperate to help me open. I also got lots of lovely post while I was ill in bed and it was such a treat as the days can be very long when you are not well but too ill to get up. My sister and I loved all our reindeer letters – we loved hearing what they were up to and Ruby was so happy when she found a chocolate coin in one of hers.

Things are still a bit tough as my epilepsy has gone bad again now because of my infection, so my mum and dad have to keep giving me my emergency medicine, but my consultant said I should start to feel better soon. I hope so!

While we were at the hospital yesterday, he told me I have to go in soon to have an operation to have a line fitted in my chest so they can get medicine into me more easily. I’m not looking forward to this but my mum promised me it will all be ok.

Josh and Ruby wanted me to say thank you to everyone who made our first Christmas with Post Pals so special. You are all very very very kind and we all really appreciate it.
So, for now, I hope you all have a good month and I hope next time I write I’m feeling much better.

Oh and just one last thing – Dominic from Cheshire, you are so funny and your letters have all my family laughing! Thank you, love Holly xxxx

As a note from Holly’s mum, I just want to say that our Christmas was lifted this year with all the kind words and thoughts that were sent to us. It is a wonderful escape and the smiles it puts on the faces of my children is priceless, so thank you to everyone who took the time at such a busy time of year to think about us. I would love to have the time and opportunity to write back personally to you all, but I’m afraid I just don’t, but I wanted you all to know that we appreciate everything so much. Happy New Year to you all and once again, thank you from the bottom of our hearts xxxxxx

Update 7th December 2010

Holly was rushed into hospital today with a bad chest and she is on HDU. My mum wanted me to say thank you to everyone who sent Holly lovely birthday wishes.

From Josh (Holly’s brother).

Update 29th November 2010

Well, what a great month of post I’ve had. Firstly I saw myself on the newsletter then I have received some lovely textured paper from Penny which I’m going to use to make some Christmas cards with I think. Then one cold day a parcel arrives for me, Josh, and Ruby, so we had to wait for Josh to come home from school which was really hard but it was well worth the wait as it was full of chocolate. Josh couldn’t believe his eyes ha-ha! Then to top it all off some gorgeous bobbles and hair bands arrived which I really love as some of them jingle so I’m going to wear them to any Christmas parties I go to.

My health has been quite stable this month so I feel really lucky as Ruby has had a bad chest infection so my mum has been keeping us apart to try and make sure I don’t catch it. I hope my health stays well as I’ve got a big week coming up as its my birthday (hooray!) and I’m going to be nine – which considering the doctors said I wouldn’t make my second birthday, it really is a day to celebrate. My mum and dad have said they have got a big surprise for me but they won’t tell me so I’ll let you all know next month how my day goes.

Anyway, I hope you all have a magical Christmas and you get all that you wish for. I’d like to say thank you in advance to you all for taking the time to keep in touch with me. Sometimes when I’ve been up all night with low oxygen or I’ve been fitting all day, it’s such a treat to listen to all your stories and open all your very kind gifts. All of my family send their love too. My brother Josh is doing his first stand up comedy performance in a restaurant where we live soon too so I’ll keep you posted as to how he gets on.

I received a lovely postcard of Dottie this month (I love hearing about all of her tales) and the lovely Kate sent me a card with lots of cupcakes on which me and dad thought was great. I was so happy to see myself on the Dottie newsletter, how exciting was that! I have shown all my family. Christmas has also well and truly started in our house with Ruby’s reindeer letters arriving, she gets so excited and now comes back from nursery every day and asks if Father Christmas has sent any post again ha-ha! Wow what a gorgeous sticker book I received this month too from Lianne and Craig, thank you so so much.
Post Pals has put a real sense of excitement and joy into our house, so thank you to everyone, you are all wonderful people.

Take care everyone, lots of love Holly xxxx

Update 10th November 2010

Well what a lucky girl I’ve been this month to receive such lovely card letters and gifts. October has been really busy as I have had lots of hospital appointments so its always nice after a long day at the hospital to come home to some lovely post to read to cheer me up.

I had my little sisters’ birthday party to look forward to this month and we had a great day at her Toy Story party. My mum painted my face with pretty flowers on and lots of glitter and my Auntie Rach got dressed up as Jessie from Toy Story and surprised Ruby with a Barney the Dinosaur cake which I helped my dad to make. Unfortunately I had a big fit half way through the party so I had to sleep the rest of the party but I had a really good time while I was awake. My new medicine is helping me lots with my fits now.

I don’t know about anybody else but its gone really cold up here now so I’m finding it hard to get out as much now as I struggle with my breathing when its really cold, but we did go to the cinema the other day because its nice and warm in there.

I also entered a completion at my children’s hospice to have my picture used on their Christmas cook book which was a gingerbread man made with my finger prints and guess what – I WON! Hooray! So I had my picture in the local paper with the chef Marco Pierre White which was a nice treat.

Anyway, this month I’ve got to start thinking about my birthday as my mum is wondering what we can do for the day. My mum is looking at special treats for me to do so I’ll let you know in December.

Holly received a letter all the way from America this month from a very kind person called Karli and she loved her stickers, we have put them around her notice boards. Also Ruby and Holly love to hear all the adventures of Dottie and all the family. We also love to see Hello Kitty landing on the door mat. Oh my goodness how lucky has Holly been this month! She has received some lovely gifts. Claire sent her a fabulous story CD which we have listened to lots, and then we had an amazing pair of panda bears that say ‘I love you’. Holly has responded really responded to them and we put the panda around her hands and she likes the vibrations from them. Best of all they came all the way from China so a big thank you Liz for thinking of Holly. Then along came Halloween and I must say there were lots of screams coming from our living room as Josh was chasing his sisters around the living room with his scary spiders. Sarah, thank you for putting so much hard work into Holly’s Halloween card, she loves feeling lots of different textures.

Again a big thank you to everyone who has thought about me and my family this month it really means so much. I know my mum would love to reply to each and every one of you personally but I need lots of care through the winter so my mum dads’ days are really long looking after me and my brother and sister. She wants you to know she really appreciates everything.

Update 1st October 2010

I started September quite well and me and my mum went on a face painting course together which was really fun, but my mum keeps painting my face now! My favourite was a Hello kitty design. I also got invited to a special night by Liverpool fire brigade, as they wanted to present my children’s hospice with a great big cheque, which was lovely for them.

However, as the weather seems to have got colder, my chest has been quite bad lately and I’ve also had lots of problems with my epilepsy, so my mum and dad took me to hospital where the doctor has given me 2 new medicines to try which seem to be working at the moment. It has been hard for me to get out of the house over the last couple of weeks, so I’ve been keeping busy at home doing lots of baking with my Dad, and I’ve also had lots of manicures which has been really relaxing. Josh and Ruby have also enjoyed eating all the cupcakes.

Both Josh and Ruby have loved receiving their special letters and gifts too, so they wanted me to say a big thank you to everyone for them.

I have just finished off September with some really bad news, as one of my friends has just gone up to heaven and I am going to miss her lots.

Post Pals has made my weeks a lot brighter though, it’s so exciting for me and my brother and sister. I received lots of gorgeous hand made cards which must have taken so long to make, so I want to say a big thank you to everyone who sent me cards. I loved reading lots of interesting and funny letters this month too – I love hearing all the tales that Spotty’s sisters and brothers are getting up to and I also got a lovely picture of Barbie sent to me coloured in so nicely by Jodie. I was so happy to receive such lovely thoughtful gifts from all the kind people this month. Sarah made me a lovely door plaque with my name on and I listen to my personalised princess CD almost every day – my favourite song is Beauty and the Beast, I think. I have had lots of messy time over the last couple of weeks and we have lots of birthday cards to make for our family so it has been fun.

I hope you all have a great October – I’ve got my little sisters Toy Story birthday party to look forward to so I’ll let you know how it goes next time.

Much love, Holly xxxxxxxxxxxx

Story written 2007

Jack was diagnosed with Cystic Fibrosis at 2 1/2. He was poorly from birth and has always suffered from digestive problems. When he developed a cough after a cold at 1 year old that wouldn’t go away, we knew something was wrong.

At Christmas time in 2006, Jack was taken to hospital with meningitis. While there, the doctor did a chest X-ray which showed the left lower lobe of his lung was collapsed due to an ongoing undetected chest infection. It was then that the doctors looked through all his medical history and performed a sweat test that came back positive. He was diagnosed in February 07.

Since then he has had a lot to deal with, he’s had numerous hospital visits and treatment but he’s trooped through it all and is still smiling!

Update 4th October 2022

I just wanted to let you know that now Jack is 18 and so much healthier, I think its time for us to move on from Post Pals and let another family have the amazing experience we have. Thank you so much for the support and smiles we’ve had over the past 15 years. 

Update 25th March 2022

Jack is doing well at the moment. He’s taking some time to get to grips with college and life after school. He hasn’t been admitted to the hospital for a year! Kaftrio has changed his life!

Update 18th June 2021

Jack is doing quite well with his health at the moment but is finding his transition from school hard. He’s looking forward to the summer holidays when they come and then looking forward to college in September. Thanks to everyone who sent post to the children. It means so much.

Sorry the update is a small one, our covid world is a small one and not a lot happens, which we’re thankful compared to the health dramas of past years!

Update 9th August 2019

Jack had spent another period in hospital, he caught what was possibly viral meningitis from me (Charlotte) and poor Harry got it too, this on top of the usual CF problems with his chest and high blood sugars. 

He is likely to need another portacath soon too and is still struggling to find a dressing that doesn’t make his skin react! He is really enjoying Friends at the moment, the classics are the best! 

Thanks to everyone who has sent the children post this month.  

Update 2nd July 2019

This year has been very much the same as last, gruelling hospital admissions and seemingly nothing left to be for for Jack but to wait for a decline until he qualifies for other treatments.

My own mental heath has really taken a tumble as well and after all these years it’s finally becoming too much.

I am starting to feel a bit more human again though so hopefully the only way for me in that respect is up.

Thank you for being there in the background, the cards and odd gift still come through the post and make us smile.

Update 2nd April 2019

Jack has spent a whole month now having frequent, painful bowel obstructions and the treatments give him no more than a few days relief before it comes back, we’re working on a longer term plan to try and stop it happening. Things are tough at school with him having had so much time off recently. 

We have some new guinea pig friends now though, that all the children adore. 

Update 10th September 2018

Jack has been really unwell, he spent the whole of the summer holidays in the hospital and Harry, Johnathan and Olivia spent theirs in childcare. Jack had a serious inflammation crisis and a bronchoscopy revealed one of his lungs packed solid with infection, we’ll go in for IVs more regularly now, every 8 weeks at the least.

I’m gutted that we missed the holidays, This has been a hard year for us, especially with regards to Jack’s health and the break would have been so welcome.

Update 24th July 2018

Jack has been really quite unwell recently. He’s had so many weeks and whole days in hospital having all sorts of tests, he keeps spiking fevers and feeling really unwell and no one knows why.  He also has a declining lung function and a wet cough so the Dr’s are getting him in for a bronchoscopy and CT scan. I’m not looking forward to those results!

Jack has also recently had a blood glucose monitor on for a week which shows he has CF related diabetes (very mildly) so he will also be starting insulin. It will be a tough few months for him after an already hard few weeks.

Thanks to everyone as always who has taken the time to send post to Jack, Harry, Johnathan and Olivia this month.

Update 3rd June 2018

As always a huge thank you to everyone who has taken the time to write and send post to the children. We’ve all had a really tough war since Jack has had his gastrostomy fitted. He’s also started steroids which has meant his immune system is lower and his lungs have grown a lot of new and strange bugs! He’s about to go back into hospital for another ‘tune up’.

Chessington was amazing, as always. Sadly, Jack became quite unwell overnight and during the second day, but still really enjoyed the rides and the park.

Jack has had a really difficult time at school due to all the time missed and that combined with a lot of hospital stays has meant all your post is really making him keep smiling. Harry, Johnathan and Olivia have loved everyone’s post as well and it’s helped to keep their spirits up when we’ve been away on inpatient stays.

Thanks again for the amazing work of everyone at Post Pals.

Update 3rd March 2018

Jack has had a month of ups and downs. He went into hospital to have a gastrostomy fitted which went well and with the aid of some amazing staff at the Royal Brompton we got him through surgery with no major bother, he’s adapted well to the peg feeds,so hopefully he’ll gain some weight now.
His chest isn’t as good though, he had a very sudden and significant dip in lung function whilst in hospital and it’s been discovered that he has small airways disease, he’s on a whole new bunch of medication to add to the already huge amount he’s on and we’ll be in close contact with the team to find out what’s next.

Update 4th January 2018

Jack has had a really tough year, his lung function continues to decline.Despite him putting everything he has into gaining weight his time is up and the hospital have decided he has to have a gastrostomy fitted in March (Mum’s Birthday of all dates!) This has really upset him and brought up all sorts of anxieties and concerns. He has had a bad bout of pneumonia as well this year that gave us all a real fright. We keep plugging on with the IV antibiotics every 3 months, but he is slowly becoming resistant and needing them more and more.

Update 16th November 2017

Jack isn’t all that well to be honest, he’s spent the majority of the last few months in hospital and after  bad pneumonia and collapse in his lung he’s struggling to bounce back.

He’s still needing to put on weight, so we’re plugging him with lots of high fat foods. (Crisps and chocolate and pizza being the favourite)

Update 30th April 2017

A huge thank you for the boys post recently, Jack received a lovely Bearhug box today and Harry has been receiving such amazing monthly project parcels and they’ve all had some fantastic cards and letters. It’s going to be a really hard time in the upcoming weeks,Jack is going back in next week for a minimum of 3 weeks (locally and London) but probably longer, until they get his digestive and weight issues under control.He’ll also have his portacath replaced and a course of IVs. We also have Harry going though an assessment for autism, so we’re all struggling at the moment. Thanks again for all the love and support.

Update 7th January 2017

Jack is doing well. We spent a week in Florida for his Starlight Wish, and the sun and swimming and running around Disney seems to do him the world of good! The new medication he’s on seems to be keeping him a lot more stable than he was and long may it continue. Annual review next month so fingers crossed it’s a positive one.
Thank you so much to everyone who thought of us over Christmas. We really enjoyed your cards and gifts, the kids were truly spoilt!

Update 13th September 2016

Jack has started high school and is having a really hard time because he doesn’t want to feel ‘different’ because of cystic fibrosis. His last clinic was excellent, his lung function is holding steady and his weight is up a bit, so I hope this sudden shake of his confidence doesn’t effect that.
He’s looking forward to opening all the lovely cards he’s received for his birthday on Thursday, so thank you for those. We’re looking forward to Chessington, too.

Update 9th August 2016

Jack is alright at the moment. Still coughing away merrily, but that’s fairly standard. We’re enjoying the summer holidays by relaxing and having a break before high school starts in September. We’re all really excited for the Post Pals Chessington trip, which is very close to Jack’s birthday and will also be the weekend before IVs start again.

Jack hasn’t started insulin as previously expected because the team felt the changes in his blood sugars were only minor. We are looking at the possibility of a feeding peg instead to try and bulk him up a bit.

Jack and Harry have been playing Pokemon Go and would love to hear about anyone else playing and what you’ve caught.

Update 15th July 2016

Jack is reasonably ok, he had a scary moment where he was quickly taken into hospital and started IVs after a sudden decline in health.He bounced back quickly and spent a week locally in hospital and then a week at the Brompton, where they fine tuned some of his medication.
He’s 3 weeks post IVs and his cough is back but we’re resigned to this happening now.
He’s starting High school in September, so emotions are running high, as he leaves his friends and teachers behind and starts out as a little fish in a big pond.
He’s hopefully going to have a gastrostomy fitted soon to help him put on weight, as he’s really struggling to gain weight.
Thank you for all the lovely post this month.

Update 5th June 2016

Jack’s chest is quite bad at present, he will also be starting insulin as his test results came back showing the beginnings of CFRD, he’s in desperate need of some IV antibiotics!

Update 2nd April 2016

Jack has recently had 2 weeks of IVs and blood sugar monitoring done, he is still coughing and the cystic fibrosis team are stumped as to what to do with him, they’ve exhausted all options. They don’t feel surgery to remove the badly affected lung is worth the risk of the operation for a small benefit. They’re going back to The Brompton to have a talk to all the specialists there and see if they can come up with anything, we’re going there in June for the next 2 week set of IVs.

Update 10th February 2016

Jack continues to struggle with a constant very wet cough, he’s started using a physio vest this past few days, he loves the shaking, it makes him sound like a robot!
The local team have asked the Brompton Doctors to see him, because they’re stumped as to what to do next.
He’s started medication for some bugs he’s grown, so fingers crossed they’ll have some effect.
Thank you for the boys post they’re always so pleased to see that post has arrived for them.

Update 21st January 2016

Jack isn’t all that well, he had IVs up until Christmas Eve, then we went on holiday ,but after a week he was back to having a bad, wet cough, breathlessness and feeling generally unwell.
We spent New Year’s Eve in hospital. I’m hoping that we might get a plan of some kind soon because at the moment Jack isn’t improving whatever we try and he’s getting quite disheartened and low.
Thank you for all the lovely Christmas cards and gifts and the fab sweet boxes! They’ve really cheered Jack up.

Update 5th December 2015

Jack isn’t doing all that well at the moment, his upper right and middle lung has collapsed slightly and he’s really struggling to keep it clear, empty and pain free. His cough remains bad and he’s been in hospital having early IVs. He remains in good spirits as always though. Harry however is increasingly struggling as the sibling of a child with a long term illness and he worries a lot about Jack and struggles to talk about it.

Update 1st November 2015

Jack isn’t doing all that well unfortunately, he’s got a very bad cough and has been getting a pain in his chest, he’s having 4+ sessions of physio a day which is exhausting for him and us.

He’s enjoying his new school and he has joined the scouts which he’s having a lot of fun at.

Thank you for the boys post this past month.

Update 24th October 2015

Jack received loads of lovely birthday cards and a couple of gifts to make his birthday a bit brighter in hospital so thank you for everyone who took the time to do that for him or to write to Harry.

Unfortunately Jack isn’t doing too well at the moment, the excessive bronchiectasis is causing him to be in pain and coughing an awful lot and these doesn’t seem to be an awful lot we can do about it. IVs are being brought forward to late Nov/early Dec time in the hope that he’ll be feeling a bit better over Christmas.

Thanks again to everyone who takes the time to write to the boys. They love getting post through the door especially jokes and funny pictures or stories. 🙂

Update 17th September 2015

What an astounding amount of beautiful cards for Jack on his birthday! Thank you everyone, it turns out having a birthday in hospital doesn’t have to be so bad after all!

Update 8th September 2015

Jack and Harry have started a new school and are enjoying it a lot.

Jack is in hospital on the 14th September for 2 weeks of ivs and some minor surgery, but it’s his 11th birthday the day after we get there. He’s not going to be able to do anything much this year to celebrate, so that’s a shame.

He’s growing some new bugs in his chest which aren’t common ones, so we’re playing the waiting game to see what we need to do about it. Fingers crossed the ivs help him to pick up and we can get him back home and back to school as soon as possible.

Update 6th August 2015

Jack is about the same as always at the moment, he is still having 3 monthly IVS and his cough is still persistent.

Jack and Harry are starting a new school in September which I’m sure will be exciting for them once they settle in.

We’re spending the summer holidays just relaxing and having some quiet time at home, as we’re all quite tired at the moment.

Update 1st May 2015

Jack is about the same as before and struggling with an ongoing wet cough. We’re keeping going with all the daily medications and physio though which is all we can do unfortunately. Jack will be going back in to our local hospital in June for iv antibiotics for 2 weeks.

We’re delighted with the arrival of our fourth and final baby in April. We’ve called her Olivia and all 3 boys are very proud to have a baby sister.

Update 4th April 2015

Jack has had a really tough couple of months, he’s been into the Brompton for a Bronchoscopy and 2 weeks iv antibiotics. We found out that he has severe bronchiectasis in his upper right lung which is causing a lot of infection and growth of pseudomonas. He’s started some new nebuliser antibiotics which might hopefully help but it has meant our daily slog just got a whole lot harder.

In more positive news, we are expecting a new baby very soon so we’re all excited about becoming a family of 6.

Update 31st January 2015

Jack is still struggling with his chest and we’re going to London for a week soon for a Bronchoscopy, CT scan, IV’s and a general thorough investigation to see if we can make headway with getting his lung function up and his cough gone.

The boys really enjoyed their balloons in the post! Thanks for all the post and the lovely gifts and cards at Christmas too.

Update 29th October 2014

Jack has had a mixed month. He has a bad cough at the moment but isn’t due IVs until December. He’s also struggling quite a bit to settle into his new year at school and we are trying to get some help to work out why and how we can support him.

He had lots of lovely birthday post in September so a huge thanks to everyone that took the time to write to him.

Jack and Harry are both looking forward to Halloween and celebrating firework night with their little brother who will be 2 on that day.

Update 29th July 2014

Jack is doing well, he’s just had another course of IVs so we have a while (3 months) before the next. His cough is fairly dry but lung function is still quite low.

Thanks to everyone who has sent us messages, cards and gifts this month.

Update 30th April 2014

Jack is doing ok. His cough is remaining infrequent and he’s keeping up with physio and medication.

Thank you to everyone who sends the boys post, they really enjoy it and it really cheers them up. Harry has had a lot of bullying so it’s nice to see him smile at the things you all send. Jack likes to open his post after getting his medicine done and he’s feeling a bit tired and grumpy.

Update 11th April 2014

Jack had his annual review in March and it wasn’t good news. His lung function has dropped a significant amount, he’s growing Pseudomonas on his chest and he’s got a really wet cough. He’s been in hospital on IV antibiotics since then and came home a few days ago. He’s feeling a bit better and I think this last admission gave him something to think about now he’s getting a bit older and can understand more. We’re trying to keep him active and aid his physio with little games that get him running around and working his lungs hard to make it more fun.

Update 28th January 2014

Jack had a tough year last year. At the end of the year he grew some nasty bugs in a forced sputum sample. He has a bad cough again and will be spending half term having I.Vs. He’s getting to the age where he is feeling quite glum about having CF now he is beginning to understand it, so it’s quite hard at times at home.

Update 1st October 2013

Jack is doing ok at the moment and he’s now 9! Thank you everyone for his birthday cards/gifts. He’s riding his new bike as much as possible so hopefully the weather stays dry. He’s glad to be back at school with his friends and he’s enjoying his new class.

Update 30th August 2013

Jack is doing ok and his current medication/physio routine seems to be working.

He’s looking forward to going back to school. He’s still playing a lot of football and is excited for his birthday as he’s learnt to ride his bike this summer.

Update 30th April 2013

Jack is just coming out the other side of IV’s, hopefully his cough will stay away and his lung function will begin to improve!

Update 30th March 2013

Jack isn’t great at the moment, he will be admitted onto the ward on the 8th April for ivs to try and shift this pesky cough! He is also currently being assessed for various learning difficulties at school so he’s having a tough time. He is still very smiley though and both the boys really look forward to the post arriving everyday incase there is a Post Pals letter for them! Jack and Harry both really enjoyed designing t-shirts and baby grows (for Johnathan) with the fabric pens too.

Update 11th March 2013

Jack is doing ok, though he has a bit of a cough so we’re trying to get on top of that, but it may result in some iv antibiotics. We finally have Jack’s annual review on Monday, so let’s hope the snow doesn’t postpone it again!

Update 4th January 2013

We’ve had a tough month or two. Baby Johnathan was in hospital for 2 weeks with Bronchiolitus and Jack had a bad cough/cold, plus Jack and Harry had tummy bugs. We’re all on the mend now though.

Jack has his annual review at the end of the month and he’s started a new anti fungal nebuliser, fingers crossed everyone please that it works and gets rid of this ongoing bug!

The Christmas cards/gifts were really great and we’re really grateful and touched that so many people took the time to think of all 3 boys. Post Pals really is an amazing charity that makes such a big difference to our lives.

Update 29th November 2012

Thank you to everyone who has taken the time to think of the boys this month, it has been especially welcome as we’ve had a new arrival! Baby Johnathan arrived with a bang on firework night and Jack and Harry are enjoying being big brothers.

Jack is reasonably well at the moment, he has a slight cough and we’re awaiting some medication to be issued by the hospital.

Thanks for Harry’s birthday cards, he had a really lovely day!

Update 9th September 2012

Jack has had a bad few months in the hospital, but hopefully things are more under control now and we’re just waiting on some test results to see what bacteria is growing in his lungs.

Jack is excited for his birthday next week and both boys are looking forward to having a new little brother in November!

Update 20th June 2012

Jack is currently in hospital, his bad cough continues and his right lung is struggling. After a few weeks in our local we’re being transferred up to London on Monday for a Bronchoscopy and to see the consultant up there for some new ideas and to try and get to the bottom of this.

Your post continues to be of comfort and a joy to both Jack and Harry so thanks very much.

Update 9th April 2012

It’s been an ok month for Jack. We have had lots of attempts at a Bronchoscopy and Iv’s but they keep getting cancelled due to other things happening at the hospital. We are all well though and Jack is ticking along in good health.

Thanks for all the lovely post, both this month and every month.

Update 11th January 2012

Jack is doing well at the moment, he is cough free and finally taking tablets!

We had a lovely Christmas break in Scotland with friends and the boys are now back at school.

They had so much really lovely post over Christmas so I would like to thank everyone that took the time to send to them.

It’s annual review time again this week so please keep your fingers crossed it goes well.

Update 9th May 2011

Jack is doing ok. He had a CT scan which revealed quite a lot of damage in one of his lungs but the rest was good. His cough has finally cleared up. He is enjoying school and the lovely weather. Thanks for all the post this month.

Update 3rd February 2011

Jack had his annual review this month. It is showing improvements in the changes in his lungs which is fantastic! We are however still battling with this cough that just won’t go!

Thanks to everyone for the lovely post this month. Jack and Harry are looking forward to Pancake Day!

Update 3rd January 2011

We all had a lovely Christmas and Jack is doing ok at the moment. Thanks so much for all the lovely gifts and cards that people sent.

Update 25th November 2010

Jack has an ongoing cough so will have to have a bronchoscopy. He is ok in himself though and is enjoying school.

Thanks for all the cards, letters and gifts.

Update 1st November 2010

Jack is doing ok at the moment – he has just finished 2 weeks of IV’s and is now looking forward to Christmas!

We went to see Disney on Ice and it was amazing!

Thanks for the Halloween gifts this month – they were fantastic!

Update 1st October 2010

Jack is ok at the moment; he is enjoying school and has joined construction club and choir. He also has a new ineb which is making life easier! He had a lovely birthday and thank to everyone who sent him a birthday smile.

Update 30th August 2010

The summer holidays have flown by and jack still has this niggly cough.

We had a fantastic day out at Chessington thanks to some tickets from Post Pals and we all had such a good time! The boys both still have their pillowcases on their beds from Post Pals too – they really loved them. We’ve also had lots of lovely letters and cards and gifts this month so many thanks.

Update 1st July 2010

Jack has been very poorly this month; he has had 2 weeks of i.v’s but is still coughing badly. He isn’t eating and is very tearful. We have 2 weeks left of oral antibiotics then if there is no improvement we will be going up to London to have another Bronchoscopy. Jack is still playing and going to school but is very tired and chesty right now.

Update 1st June 2010

Jack isn’t too bad, he will be having iv antibiotics in hospital for 2 weeks on the 8th June and they are routine, but he does have a cough that he cant shift as well at the moment.

Update 2nd May 2010

We have had a very tough month this month as Jack’s Nan (my Mum) passed away during surgery so we have all been grieving and in shock too. Jack was so very close to his Nanny.

Jack is continuing to do well though no changes of the CF front. He is enjoying school and his topic which is ‘under the sea’.

Both boys have really enjoyed the influx of post they have received this month, thank you everyone.

Update 8th April 2010

Jack is doing ok at the moment. We have had a tough month as his Nan (my Mum) is in hospital waiting for a serious heart operation, but we have been keeping our spirits up as best we can.

Jack and Harry loved the Bunny that was adopted for them, it was a lovely gift.

Jack is still enjoying school and keeping well.

Update 4th February 2010

Jack is continuing to do well and his annual review was really positive with an improvement on this time last year. Our next challenge is to get him to swallow tablets, so if anyone has any tips, please let us know!

Update 4th January 2010

Jack is continuing to do well and we had a lovely Christmas. Thank you to everyone who took the time to send Jack and Harry something.

Update 28th November 2009

Jack has had a tough month, he was admitted to the Royal Brompton in London to have his Portacath replaced and we have just finished 2 weeks of I.V’s but now hopefully things are back to normal (whatever that is!).

Thanks for all the lovely gifts and cards you have been sending and thanks for not forgetting Harry, we really appreciate it!

Update 1st November 2009

Jack is in hospital at the moment, he has had to go to London for an operation to change his Port and a Bronchoscopy.

Update 29th September 2009

I would like to thank everyone this month who wished Jack a happy birthday. He had a lovely day and was really pleased to receive all your lovely post.

He also started school and is getting on really, really well.

We are going into hospital tomorrow for a Portacath rescue mission as Jack’s isn’t working as well as it should right now, so please wish us luck!

Thanks again.

Update 9th September 2009

Jack is doing ok though he has still got a bit of a wet cough which is hanging around.

He is very excited to be turning 5 this month and starting ‘big’ school.

We had a little holiday which was lovely.

Thanks to all who have sent post this month. I would be really grateful if anyone sending post to Jack could add a little note to Harry as he is feeling a little left out!

Update 4th August 2009

Jack has a bad cough at the moment and we are trying to get to the bottom of it! He is fine in himself though, still a ball of mad energy!

He is looking forward to school and has got his entire uniform ready now. He just has the important task of choosing a lunch box left!

We are going to Devon for a little holiday soon so we are all looking forward to that.

Thanks to everyone who sent post this month.

Update 1st July 2009

Jack is doing well and he is looking forward to starting ‘big school’ in a couple of months.

We’re also going on holiday for a week to Devon to hunt for dinosaurs which he is looking forward to.

Thanks to everyone who sent something to Jack and Harry this month.

Update 31st May 2009

Jack is continuing to do well. He is having routine I.V’s this month. He is getting excited about starting school in September.

Thanks for all cards/letter/gifts this month and everything for Harry too.

Update 1st May 2009

Jack is doing well at the moment. He is enjoying the good weather and has been spending a lot of time running around outside which is great physio! He has been visiting his Primary school to get him used to it for when he goes in September and he is very excited.

Thank you for the post and Jack really loved the bear he was sent.

Update 3rd April 2009

Jack has had a few different coughs and infections but is still in high spirits.

Update 1st March 2009

Jack is currently waiting to see if he will need some I.V’s in hospital. He has started coughing after being taken off his medication at his annual review.

Update 2nd February 2009

Jack is continuing to do well. He had his annual review last week and he is showing no signs of getting worse. His doctors have stopped a lot of his medicines to see how he will cope without them – we’re a bit worried by this but are hoping he stays well without them.

Thanks for all post that has been sent this month.

Update 1st January 2008

Jack is dong well at the moment.

We had a really good Christmas and i would like to thank everyone who sent a card/gift or message to Jack and Harry – it was very much appreciated and they loved everything they got.

Jack is still having 3 monthly IV’s and will hopefully have his annual review in January.

Update 28th November 2008

Jack is still doing well and he is really looking forward to Christmas.

He will be having 2 weeks of i.v antibiotics from the 2nd December so he is a bit sad to be missing school.

Merry Christmas to everyone.

Update 1st November 2008

Jack is really well at the moment, his Doctors couldn’t be happier with his progress and current health.

We had a lovely holiday this month and Jack and Harry saw Bob the Builder, Fireman Sam, Barney and loads more of their favourite characters. We had a really lovely time.

Jack is due an annual review sometime soon so hopefully the results will be positive.

Thanks to everyone who has sent such lovely cards/gifts and letters to Jack, we are all really grateful that you guys take the time to make him smile each week.

Update 30th September 2008

Jack is continuing to do well. He has started a new nursery and is making lots of new friends. We are going on holiday in 2 weeks and Jack’s really excited as he will be seeing Bob the Builder! He had a lovely birthday party and we would like to thank everyone who sent cards and gifts.

Update 30th August 2008

Jack is really well at the moment and he will be starting at a new school in a couple of week’s time.

It’s Jacks birthday on the 15th of September and he is having a surprise party!

Thanks again for all your lovely cards and gifts.

Update 1st July 2008

Jack is doing really well at the moment. I have been trained to administer his i.v’s so he can have them at home rather then spending 2 weeks in hospital every 3 months. He is cough free for the first time since he was diagnosed, so we’re keeping our fingers crossed he will stay well for the time being.

Update 29th May 2008

Jack is doing ok. He will be in hospital from the 2nd June for at least a week for i.v’s.

Jack has been having lots of fun on holiday and he has learnt to swim!

Update 30th April 2008

Jack is doing so well at the moment; he will be starting home i.v’s soon which will be really great. He will be going into hospital for a week on the 2nd of June then coming home for a week on home i.v’s then hopefully all his other i.v’s will be at home if he is well. His port has been a godsend, just one tiny prick and his i.v’s can be administered without any pain or tears and no theatre!

Jack still really loves getting post and especially likes photos of people’s pets and hearing about their lives. Jack’s brother Harry is now older and would like some post to read as well please if possible!

Update 4th April 2008

Jack spent last month in hospital and had a portacath fitted into his chest. This will give the doctors direct access for all future antibiotics. Hopefully this will make a huge difference as Jack has had a lot of problems in the past keeping lines and canulars open. Jack is back home now and is well again! He is currently off school for 2 weeks for half term.

Update 28th February 2008

Jack has had a tough month this month. He has been in hospital for 3 and a half weeks. He had IV antibiotics for a chest infection and also had a portacath fitted for future use. He is still very sore but getting there and has been allowed home today so he’s really happy.

Hopefully we can now have a quiet period where he will stay well for a while. He will also be having 3 monthly IV’s now to keep things under control.

Thanks to everyone who sent Jack and Harry post this month, we had a tough time in hospital so it really cheered us up. Postpals really has made a difference to our lives, when things aren’t going well there is still post to look forward to.

Update 31st January 2008

Jack isn’t well and he is going in to hospital for 2 weeks of intravenous antibiotics on Monday and then he will be transferred to London to have a portacath fitted.

He had a lovely Christmas and we would like to express how much all the cards and parcels we received meant to us, especially Jack who loves receiving your post! Thank you!

Update 6th December 2007

Jack is not doing brilliantly at the moment. He has a reoccurring cough; he may have to have regular i.v’s at 3 month intervals starting from January.

He has his annual review in London next week and we’re hoping it goes as well as possible.

We have had a breakthrough with Jack’s nebulizer as he isn’t crying anymore and just accepts it, so that’s a big struggle over each day.

I just want to thank Post Pals; it’s a fab organization that brightens the day of a child who can’t understand why life’s not great some days. Jack knows that whatever treatment or procedure he has to have he will always have Posty to look forward to!

Update 5th November 2007

Jack is well. He recently had 2 weeks in hospital having i.v’s as he has got psudemonious (sp?) He is now taking daily nebulizers and having more antibiotics. He doesn’t like his Neb’s as he has a fear of masks, but we are hoping he will get used to it like he did his other medication. He has lost a lot of weight so he has lost his little pot belly, but all in all he is feeling a lot better after that dreadful cough he had.

Update 16th October 2007

We have just found out Jack has an infection and is being admitted to hospital for 2 weeks on Thursday 18th Oct until 1st Nov for I.V antibiotics. I am sure any extra smiles and tlc would be much appreciated.

Update 5th October 2007

Jack celebrated his 3rd birthday in September. Thanks to everyone who sent him birthday cards and gifts, he had a whale of a time opening them and showing his friends at his birthday party.

He is ok health wise, apart from a bad cough. If it’s still lingering by the time he is in clinic (October), there is a good chance he will have to go into the children’s ward for 2 weeks of I.V’s. We have stepped up his physio so hopefully this won’t happen.

He is doing well at school and has made a new best friend, which is really lovely to see. He has come out of his shell now he feels well which is fantastic for us to watch. He is a lot more like a normal little boy now; before he was diagnosed he was very withdrawn and quiet.

Post Pals is a fantastic organization. It has really helped Jack to look forward to each day, which was hard for him before. We would like to thank everyone who has taken the time to send anything to Jack, it really brightens his day, especially when he’s feeling poorly. He waits for our Postman everyday to see if there is anything nice for him. He also really enjoys sending the other Post Pals cards and pictures he has made.

Update 23rd August 2007

Since having a Bronchoscopy a few months ago, for which he was anesthetised, Jack has been having nightmares about hospitals and doctors. We have been collecting a doctor’s kit to dress Jack’s dog teddy (Ivy) up in so that he has a companion on his hospital visits!

I just wanted to thank Post Pals and everyone who has sent Jack wonderful cards and parcels! It really brightens his day when the postman arrives with a handful of mail for him. I just love watching him tear open the letters in anticipation and i love seeing his face light up when he finally gets inside the envelopes. Post Pals has made a huge difference.

Story written 2011

James was born 4 weeks early due to a placental abruption and spent his first week in neonatal care due to his blood sugar levels and the fact he was deprived of oxygen at birth. Due to the deprivation of oxygen at birth, James had a routine ultrasound brain scan which revealed small white patches at the sides of his brain and so was sent for a follow up MRI scan at 6 weeks.

At 8 weeks old we received the results of his MRI which showed the white patches had gone but he had a smooth brain. We were told it was Lissencephaly but at the time we were told that they didn’t know what this meant.At 5 months old James began to have Infantile spasms (which is the infant form of epilepsy). Our GP referred us to Accident and Emergency at the Sick Children’s Hospital and they sent us for an EEG, which revealed his electrical brain activity. We then spoke to a consultant to whom I explained everything that had happened since James was born and she explained the details of James’s condition to us properly.

Lissencephaly basically means that the brain is smooth, not completely but almost. The long term outcome of this condition varies from person to person. James is on the severe end of the scale but not the worst. James has global development delay. He also has epilepsy which for me is the hardest part of his whole situation – watching my baby have a fit is the most devastating thing I have ever seen.

Update 13th October 2016

As a family we have decided it’s time for us to move on from Post Pals, we do genuinely appreciate everything you guys have done over the years it’s restored my faith that people do care and genuinely want to help and we as a family will be forever grateful for that.

Update 5th September 2016

James is back having a rubbish time again. Poor boy is having plenty of seizures but we’re getting a plan together with the hospital and hopefully that’ll help. Otherwise he’s doing well, enjoying being back at school.

Update 7th August 2016

James is doing fairly well apart from his thyroid levels have dropped again so they want to do more tests so will see what happens with that. Otherwise he is enjoying his holidays but I think missing school so only one full week till he’s back with all his friends!

Update 7th July 2016

James is doing rather well at the moment we been slowly reducing one of his meds and he appears to have found his voice again and is shouting at us all day long lol thanks to everyone as always for the lovely gifts and cards as always it is very much appreciated.

Update 2nd June 2016

James has been doing well since his last hospital stay. He’s had seizures here and there, they’re horrible ones but not as many as we can sometimes have. Not long now till our summer holidays (Scottish kids finish at the end of June). We’re going for a break in a caravan for a week which we all can’t wait for.

Update 4th May 2016

James is doing much better after his hospital stay!! However, seizures have been a bit yukky again.

Update 2nd April 2016

James is doing well, much happier and is more settled than he has been in a while, which is great for us!  We are just taking everything one day at a time and enjoying a happier boy for however long he is happy! Thanks again for all the lovely cards and letters, they always means a lot!!

Update 3rd March 2016

James has been on fine form recently (waiting for the crash back to earth!), but it’s nice to see him smiling and laughing again and being very naughty!! Thanks again for everything, it means so much to see my little man is so loved.

Update 7th February 2016

James is doing ok, he’s still all over the place seizure wise and still very quiet. So we are going to make some more med changes (yes, more!) and see if we can get my happy boy back! I really don’t like seeing him so sad and miserable. Thanks, as always, for the lovely letters and gifts. It really does mean so much!

Update 4th January 2016

Hi everyone. Things are so-so here. We are weaning James off phenytoin, which has been painful with lots and lots of seizures but we have managed to stay out of hospital, so that’s good!  We are not any further forward as yet but now the phenytoin’s out the way we can move forward. I’ll keep you posted as and when we know more! Thank you all, as ever, for the generous amount of Christmas wishes and presents James received. There are no words to describe how grateful we truly are.

Update 2nd December 2015

Speaking of rough years, I’ve not really said much but here goes! The start of this year was a rubbish one for James. He had a hospital stay for a bad sickness bug, then shortly after he had another one due to rubbish amounts of seizures. Then we had an amazing once-in-a-lifetime trip to Florida celebrating our boy making double figures (a massive birthday for our lissencephaly warrior). Then when we got home he seemed to change – he became quiet, withdrawn and tired. My goodness was he tired – 10-30 minute naps every couple of hours, then sleeping all night! Puberty was mentioned several times but my Mummy instincts just weren’t convinced, so we kept nagging the hospital (my wonder was non convulsive status), so we began blood tests and scheduled an EEG. The blood tests showed an underactive thyroid, so more blood tests were done which confirmed a definite underactive thyroid so we were referred to endocrine doctors (yay more doctors/appointments) and they confirmed the under active thyroid. But not just the thyroid, the pituitary gland also (central hypothyroidism), so more tests (yippee)! A bone age scan (which is fine), cortisol levels, growth markers, and hormone markers which are all ok but not very high (so no puberty just yet) and a CT scan to look for abnormalities around the pituitary gland (again thankfully nothing there). So the upshot is we don’t know what’s wrong with the pituitary gland, but, so far, after several increases of the thyroxine medication James has been put on his level is still low and we don’t know why. There is a possibility that his pituitary gland is underdeveloped in line with his brain condition, but we are questioning his epilepsy meds after finding a small research paper suggesting some epilepsy drugs can increase/decrease thyroid function but we need to discuss this more with his neurologist who we see tomorrow! And, just in case that isn’t enough, the 20 minute EEG he had has revealed periods of non convulsive status, so James will be going back on steroids. But first (after yet another blood test) he needs the chicken pox vaccine as he has no immunity to it and steroids will leave him with no immune system whatsoever, and sadly we know that chicken pox can be fatal for kids on steroids!! But once he has had the vaccine it will be 3 months before we can start steroids ! So, yeah, that’s been our jam packed year!

Update 1st November 2015

James is keeping ok, still very quiet but somehow seems a bit happier. He’s got a few hospital appointments coming up so will hopefully get all his results and see where we go from there x

Update 13th October 2015

Still figuring out James’s issues. He is still tired a lot but after his EE we now know, on top of the existing issue, his EE is showing periods of non convulsive status. So, at some point soon, he will be going back on steroids but first we need to check his chicken pox immunity. His immune system will be non-existent on steroids and chicken pox can be serious if he was to catch them, so if he has no immunity to them he will need the vaccine, then we need to wait 3 months before we can start steroids. So it’s all fun and games over here. I’m sure he will be happy when he realises he’s going to be off school for six plus weeks whilst he is on the steroids. Though if last time is anything to go by it won’t be much fun for me or his Dad he was a very grumpy little man. Thank you all, as always, for everything. It means so much.

Update 5th September 2015

James is back at school and seems to be happy enough. There’s still no change in his quietness and tiredness, but we have found the probable cause. I won’t say too much just now until we know a bit more, but lots of tests are to be done. We will be busy until we figure it all out, though hopefully it’s not too serious and manageable!

Thank you all, as always, for your letters.

Update 4th August 2015

James still isn’t great and is really quiet despite being off a certain medication, so we are back at the hospital in a couple of weeks and we will see what his doctor says. He did have some blood tests done and everything came back fine, but we’re still waiting on the vitamin levels results. I’m not sure what we’re going to do, but I think a 24 hour EEG is next to see how things are in his wee head.

Update 4th July 2015

James is hanging in there, but we’re making more changes to meds due to him being so quiet and withdrawn. We’re unsure if the meds are the cause, but we will start there and then see where we are at. It’s breaking my heart seeing him so miserable.

A huge thank you for our beautiful paper cuts, they are much appreciated.

Update 29th May 2015

Thank you, as always, for all the letters and birthday cards for James. I can’t believe the boy is 10! It makes this mummy so emotional! James is doing ok but is very quiet. This is probably to do with seizures but medication changes are on the horizon so maybe that will help.

Update 6th May 2015

Ok I said this would be a better update, so here it is! We took James to Florida and it was amazing! We met Mickey Mouse (4 of them!), Minnie, Goofy, Donald, Daisy, Pluto, Elsa, Anna, Buzz, Woody and soooo many others! James was very well behaved despite lots of seizures.

We also went on a safari at Busch gardens and got to feed leaves to giraffes which was brilliant. James even joined in! He also met Elmo and big bird at Busch gardens! We swam with dolphins which was amazing and James seemed to really enjoy it so much that he cried when it was over! It was a holiday of a lifetime making memories we will never forget.

So other than that, James is well though we are still trying to get better control of seizures. Oh and soon my little baby turns 10! Can’t believe how fast the years have rolled by and how much of a big boy he is now (but still my little baby)!

Update 4th April 2015

James is doing well but still up and down with seizures – isn’t he always! The next update will be better, I promise!

Update 1st March 2015

Well February has been quite rubbish! Lots of nasty seizures landed James a stay in the hospital and a fourth med. He’s doing ok now, just back to his daily seizures, which isn’t great but beats the horrible clusters he had!! Other than that he is doing well.

Update 31st January 2015

James has been well overall, though still has his seizures (as normal) and recently spent a few days in hospital with a nasty sickness bug. He is ok now and back to his usual cheeky self.

Update 10th January 2015

Firstly, a huge thank you for all the cards and presents for James this Christmas, he was thoroughly spoilt!! And I mean spoilt!! So many lovely gifts!

James has started the year in pretty good health despite his seizures increasing since the new med has settled in, but that’s just par for the course for James!

We had a wonderful Christmas and on Hogmanay we went to his aunt’s wedding. After the New Year bells his daddy asked mummy to marry him!!

Hope you all had a great Christmas and New Year!

Update 30th November 2014

James has been up and down and quite battered from his seizures. He ended up having an overnight stay in the hospital but he has started a new med so hopefully we will see a difference soon.

Update 30th October 2014

James is not too great at the moment, he is having lots of yucky seizures so is going to see his doctor next week and see what steps we are going to take next. Fingers crossed we can find something to help.

Update 29th September 2014

James has been very good lately and we are just back from a week in Tenerife which was amazing. James became poorly while we were there but after a visit from the doctor and some meds he was much better.

Update 31st August 2014

James is doing well. A few seizures are creeping in and there’s an ongoing problem with his button, so he has started yet another med for his button. However, they are concerned it may be untreatable so we will wait to see what happens next. James is good in himself though.

Update 2nd August 2014

James has enjoyed the summer holidays and only has one full week left until he’s back at school. We are going away for a few days before he goes back and fingers crossed we have a good time.

As always, thanks for the lovely cards and letters.

Update 3rd July 2014

James is doing well and he has just started his summer holidays. We’ve not decided what we are going to get upto yet though!

Update 31st May 2014

Thank you so very much for all of James’ lovely birthday cards. We had a nice day with a trip to the safari park after school in the glorious sunshine. It was a great day, as always.

James has been doing well health wise but seizures are creeping in.

Update 30th April 2014

James is doing well. He had a short seizure free period though they are now creeping back in. So we just watch and wait and a plan is in place for a new med if we need to.

Update 5th April 2014

It has been a rough few weeks with lots of yucky seizures and a really bad cold. Our poor boy has been off school for nearly 2 weeks but is now on the mend and we just need to sort these seizures.

Update 1st March 2014

James is still having trouble with seizures and we are adjusting his meds again. It’s still too early for VNS to make a difference, but fingers crossed we get there.

Update 29th January 2014

James recovered well after his vns operation on 15th January. It is too early to tell if it is helping seizures but it will get turned up on 7th February and then every month until we are seeing improvement, so fingers crossed.

Update 3rd December 2013

James is doing well though we are noticing an increase in seizures now clobazam has settled in his system, but we have a possible date of January 15th for his VNS operation.

We want to thank you all for your kindness and want to wish you all a very merry Christmas and a merrier New Year from James, his dad, and myself xxxx

Update 30th October 2013

James is doing ok just now, he is back on clobazam to control his seizures and though still has all the little ones, the big ones are better. We are going in sometime after Christmas for an operation called a VNS to see if that will help long term with seizures. We are dreading it!

Update 28th September 2013

James has been doing well though we’ve had another juggle of his meds (yet again). The next step is the VNS (vagal nerve stimulator) so we’re meeting with his consultant in a couple of weeks to discuss and get the ball rolling. We’re feeling kind of nervous but need to do what we can to help James in the long term.

Update 31st August 2013

James has been doing reasonably well. He is back at school now and seems happy that he’s back with his teaching assistant from nursery (which is nice for them both as they both totally adore each other).

Update 10th July 2013

James has been reasonably well but we had a scary weekend of seizures which landed him in hospital. He is now on his summer holidays and Edinburgh has been lovely so far and very hot. It is too hot for james to spend too much time outside but we got him a much needed new swing seat so he has been over the moon at getting out on that.

Update 4th June 2013

James has been doing well and he is finally off his med, yippee! So we will see how he goes.

He had a fabulous birthday, I can’t believe my baby is 8 now! Thank you to everyone for the cards, they were all fabby xxx

Update 30th April 2013

James is keeping well overall, we’re still weaning off his med but it has been fairly smooth (a couple of rough days but nothing we can’t handle). We still have a few weeks to go until we’re off it completely so things could change.

Otherwise, James is good and a happy bunny full of kisses and cuddles, so we’re a happy mummy and daddy.

Update 29th March 2013

James has been fairly well. We are currently weaning off a medication (I know I keep saying that, but have to keep changing meds). So far it has been ok, but today hasn’t been so great as he has had 17 tonic clonics in an hour and both his rescue meds. We’re hoping it is not going to stay that bad until we try something else, but when it comes to epilepsy, who knows?

Thank you for the lovely Easter cards and the lovely Christmas post that arrived, it is always lovely to be thought of by people and thank you especially to the little girl from America who wrote James a letter like she was writing to a rock star – such a sweet letter and it made James’s dad and I giggle.

James is currently enjoying the iPad so if anyone knows any good apps that are easy for James to use, we would appreciate recommendations.

Update 3rd March 2013

James has been a little better and we’ve just had a lovely holiday in Lanzarote where James got to ride a jet ski!! We’ve still got lots of med changes to take place which we will now begin.

Update 30th January 2013

James is doing well, though he did have a bad infection in his button, but we are finally getting it to clear. His seizures are still around but it is still early days with the med changes and still more to come. Otherwise he a happy bunny and thanks for our post.

Update 6th January 2013

James did very well over Christmas and was in great spirits on Christmas day. Now it is time for all the med changes so we’re hoping 2013 isn’t overly dramatic.

Thank you for all the beautiful cards and gifts sent to James over Christmas, it was very very sweet, as always.

Update 1st December 2012

It’s been a hard month for James with a lot of seizures, a bad cold, and a hospital stay in the middle of changing meds, so we knew it would get tricky at some point. Everything is on hold now until after the new year to try and give him a break and avoid the hospital if possible.

We want to wish you all a very merry Christmas xxxx

Update 4th November 2012

It’s all over the place for James just now, he’s having seizures big and small. My little lamb is having a rough time and there are lots of medicine changes to come so we’re just hoping that the weaning off doesn’t go badly.

Thank you for the lovely Halloween package.

Update 3rd October 2012

James is still on a roller coaster of seizures and is at full dose of a new medicine and nothing has changed, so we’re back at hospital at end of this month and will probably begin weaning him off the new med. It is a bit annoying when we have just spent 6 months getting him on to it, but it is not working so it’s a case of needs must.

Thank you for your post.

Update 9th September 2012

James has been up and down lately and ended up in hospital overnight because of his awful seizures. He also spent the weekend at the hospice which was nice apart from the balloon in his button bursting!

Thank you for all the lovely postcards, we’re going to get them all together in a frame for James’s bedroom wall. Thanks everyone, you are all so kind.

Update 20th June 2012

It has been a weird month for James as he is still having rubbish seizures and we’re hoping this new med starts working soon. We’re getting ready for the summer holidays and are just hoping the weather holds up so we’re not stuck at home for 7 weeks, but we live in Scotland so we won’t be holding our breath!

I just want to say a huge thank you to everyone at Post Pals for everything you do.

Update 8th April 2012

James is doing well. We’re getting his room all decorated soon and can’t wait until it is all done and i get the rest of my house back – the boy has too much stuff! He is keeping pretty well, he has seizures here and there but nothing major.

I want to thank you all so much for the cards and letters as it means so much xxxxxxxxxxxx

Update 12th March 2012

James had a great time at Rachel House Hospice and was spoilt rotten with compliments on what a handsome wee chap he is! Steve and I enjoyed it too and it was nice to have some relaxing family time. We are going to Derby this weekend to meet other families with a child with lissencephaly, so we’re excited about that.

Update 5th February 2012

Poor James had an infection in his button site which ended in him having a small operation to remove the infection as the cream and antibiotics weren’t doing anything. He was a wee star and did amazingly well though and seems to have bounced back brilliantly.

Update 11th January 2012

James’ health has been all over recently. We’ve had 5 weeks of constant bugs and have started a second medicine to help him sleep. It is currently taking 2-3 hours every night to get him to sleep which often results in James becoming very distressed. The new medicine isn’t doing much but it will be reviewed at the end of January along with his seizure medications, as i think it is time to change them to hopefully make things better for him.

Other than that, we are going to be staying at Rachel House (which is a hospice) for a weekend every few months, so we’re looking forward to a bit of extra family support.

Update 30th August 2011

James has been doing ok, although he has got a cold so has had a few seizures, a day off school, and loads and loads of cuddles.

Update 8th August 2011

James has been doing ok lately. We enjoyed our trip to Skegness and James’ dad wants another weekend away at some point! Not sure where yet but we will see.

James had an MRI recently so we’re waiting on the results, though it was more just for updated pictures of his brain, so fingers crossed nothing new shows up.

Update 2nd July 2011

James has been up and down with seizures, but nothing too major.

We’re just getting ready to start our summer holidays so I’m hoping to get him out and about with his aunt and uncle. We’re really looking forward to our holiday in Skegness too and just hope the weather is good.

Update 16th May 2011

Thank you everyone for the beautiful birthday cards James received and to Steph for the parcel of presents (so very sweet) thank you so much.

James has had a good day despite the yucky seizures that have appeared over the last week.

Update 4th May 2011

James has been doing ok but is going through a phase of a lot of screaming spells. We believe they are seizure related but par for the course with his brain condition and the type of epilepsy he has.

He is otherwise doing well and looking forward to our holiday to Skegness in the summer.

James loved the April showers picture of Dottie and I will get it framed and put up in his bedroom. I just wanted to say a big thanks for the Easter presents for James too as it was so sweet and generous.

Update 3rd March 2011

James has had an ok month this month, despite screaming spells coming and going and having tonic seizures in his sleep, but it is all manageable for the moment. I’m just hoping it is a little blip and not a sign of bigger seizures on their way.

We are having lots of fun with the finger puppets, although I do have sore fingers!

Update 31st January 2011

James has been ok. He has had another cold and so another week off school. It’s his second cold since November. Thankfully seizures have held off through it so far. Other than that he is doing great and is full of smiles and very cuddly, which mummy loves.

Thanks for the lovely Dalmatian from Dottie who we named Oso and thanks for the very lovely sensory toys. We are very happy to be a part of Post Pals.

Story written 2005

Jayde was diagnosed with DBA when she was just 7 weeks old, she was rushed to hospital (on my request) and her HB level was 2 (she should have been dead!) After a lot of tests and transfusions she was diagnosed with DBA.

Since the age of 7 weeks (she is now 9) she has received a blood transfusion every 3-4 weeks and at 18 months she first got a vascuport. She has been receiving Desferrioxamine infusions through a pump which she wears in a bumbag round her waist, connected to her vascuport every day and every night (apart from Sat and Sun – we are allowed to have a break then!).

She goes to a mainstream school and is very intelligent even though she misses at least a good third of school a year thought illness or transfusions, or problems connected to the pump, or infections of her port!

Jayde’s only cure would be a bone marrow transplant (we have tested all immediate family and sadly no match).

Jayde is a happy, intelligent child. She enjoys her life and I only hope that she will continue to do so! (From her Mummy).

Update 20th February 2014

As Jayde is 18 she is now moving on from Post Pals. We wish her all the best and here is a lovely message from the lady herself 🙂

I honestly can’t thank you enough for all the help you have given me for over half my life! All the letters and cards and gifts I’ve received have made me smile so much and have got me through a lot. I am so thankful and I can’t begin to tell you how inspirational Post Pals is for helping so many children already and many more to come!

I’m doing okay but I still continue with the 3 weekly blood transfusions, iron chelation medicine every day and various appointments. I am currently doing an apprentice at a nursery which I’m really enjoying although it’s very tiring. I am being constantly tested on my vital organs for iron overload from blood transfusions and they say my liver is worse affected at the moment, but it is reversible damage if I keep taking my drug. On the other hand, the doctors are concerned that the dosage of the drug could also damage things, with my eyes already showing signs of cataract. I have been discussing options with a specialised transplant doctor in London about the possibility of a bone marrow transplant which could possibly cure my illness, although it’s a lot to take in and think about! I am going to see them again in March and they will do initial tests and that’s when I will decide what I would like to do/if I’m healthy enough to have one. So that’s a wait and see.

I will definitely keep you updated and we’d love to come to the Post Pals parties in the future! I would also love to start writing to some of the children on Post Pals because I can say from an insiders view that it honestly is an amazing feeling to receive happy post when you are most down! Thank you so much again, and I hope to see you at the party this summer!

Update 27th January 2013

Jayde has been told recently she has liver damage (because of the iron overload). It is 44% of her liver so they have upped her drug to see if it may help. She has been in discussion with the doctors about a bone marrow transplant, but sadly none of her siblings match and they also won’t consider it until her iron levels are lower, so it’s probably not an option.

Jayde is doing well in her college course, she is doing health and social care because she would like to become a peadiatric nurse!! The amount of time she has spent in hospital must have had some weird effect on her! She does miss a lot of college still but has managed to catch up, just!

Update 16th April 2012

Jayde has started a new drug to try and help with the build up of iron around her organs, she now wears a pump for 12 hours a day which is attached via a small needle in her stomach. Jayde is getting on well with this so far. Her transfusions are now every 3 weeks as her hb seems to be dropping quicker. Jayde is going through transition at the hospital so she is going to have a transfusion on the adult ward soon to get used to it for when she turns 18, scary stuff!

Jayde was given a wish at the end of March by ‘dreams come true’ she got to meet her idols ‘mcfly’. Oh my goodness she was a state, I went with her and she just burst into tears as soon as the boys came into sight! They all hugged her and had a nice chat and signed her shirt and poster she had made – safe to say I think she enjoyed her wish!

Update 9th January 2012

Jayde is having some problems with her medication at the moment and we are also waiting for an appointment to see a specialist about the possibility of a bone marrow transplant.

Update 7th October 2011

Jayde is now having her transfusions every 3 weeks as her levels are dropping faster as she is getting bigger.

She had her 16th birthday on the 1st and had a party to celebrate which was fancy dress. Jayde went as Lady Gaga!

Update 20th February 2011

Jayde’s new brother arrived on 14/01/11 (his daddy’s birthday) and he is very yummy!

Jayde is waiting to have a bone scan at the moment. She is getting on well with her new central line and it has made the blood transfusions a lot easier and quicker.

Update 7th December 2010

Jayde has had 2 transfusions now through her new line and both went really well. She was home by 8pm (which is a first as it is normally early hours of the morning!) so fingers crossed it stays like this for a while. We are getting used to flushing the line each week and soon Jayde will try and do it herself! We are all getting ready for the busy next few weeks ahead – Christmas, Kyra’s birthday on New Years Eve and the arrival of Jayde’s baby brother (due 6th January) so we’re hoping Jayde will keep extra well!

Update 23rd October 2010

Jayde had her new central line fitted 2 weeks ago. Unfortunately she has already got infections in 2 of the wounds from surgery, so she is on antibiotics at present but is feeling ok at the moment.

Update 14th October 2010

I just wanted to let everyone know that Jayde had her operation for a new central line on Thursday. All went well and fingered crossed it will work and she won’t have to have loads of canulars each transfusion.

Thanks to all who sent her good luck messages through Post Pals.

Update 25th September 2010

We have finally got Jayde’s operation date for her new line to be fitted and it is the 6th October.

Update 7th September 2010

Jayde has been back to London and has been booked in for various mri scans at the end of October as she has a high level of iron build up on her liver. She is still waiting for her central line and has had to be stabbed with needles up to 12 times on each transfusion, so hopefully the docs will hurry up and give her the line as it really isn’t fair on Jayde and she is getting very fed up with it all.

On a good note, she had a wonderful birthday and would like to say a huge thank you to everyone for her amazing cards and presents, she loved all of them and had a wonderful day.

Update 22nd August 2010

Jayde is still waiting for a central line – hopefully soon! She is still getting pains in her knees and is still going to physiotherapy for them.
She is keeping herself busy planning her Twilight themed sleep over for her birthday.

We are also happy to announce baby number 7! Due on January 6th 2011 – it’s a boy.

Update 4th June 2010

Jayde has finally been told she can have her port taken out and a new one put in (the old one hasn’t worked for ages and she has had to be stabbed lots and lots of times each transfusion as her veins don’t work either!). We’ve just got to wait for a date now.

Other than that, Jayde’s legs are quite bad at the moment again and she is finding it hard to walk long distances.

Update 4th November 2009

Jayde has been having a bit of a rough ride lately, she is starting to not like the fact that she has to go to hospital so often or take her medications each day. She is also having a lot of physiotherapy for her legs, has to wear new insoles that have been made for her, is seeing a dietician (as she has put on a lot of weight due to her medication), seeing a skin doctor as her skin is extremely dry (again possibly caused by medication), starting counselling for kids with long term illnesses soon, and now has a home tutor to try and help her with all the school she misses because of illness.

So, all in all, she’s a bit down in the dumps at the moment and who can blame her! Especially with all the ‘normal’ problems of being a 14 year old girl to add to everything else! Hopefully the counselling might help her a bit and her mood will lift.

Update 13th May 2009

Jayde has had some special insoles made to try and help her leg pains, along with having physio. We get them on Monday so hopefully they will help her a bit.

Update 12th March 2009

Jayde is going into hospital next week (17th March) for her port to be changed. I will update you as to how it all goes.

Update 9th February 2009

Jayde is seeing her surgeon this week to decide on what to do with her port (it has stopped working) so she will be having another operation very soon.

Update 25th January 2009

Jayde has been having physio for her knees which is helping a little bit. She is due to see someone in orthopaedics about having some sort of shoe insole or wedge to try and help her a bit as her leg muscles aren’t as strong as they should be, hence why she is getting pain in her knees. We are not sure if this is anything to do with her condition yet. She is also still having transfusions every 4 weeks and taking her desferal every day.

A big thank you to everyone who sent cards and gifts for Jayde and her siblings at Christmas. They are in the process of writing thank you letters to those who left addresses, but thank you to everyone.

Update 4th June 2008

We had a lovely family holiday in turkey 2 weeks ago, but when we got back Jayde was due blood and unfortunately got another line infection, so spent the end of last week in hospital. She is still on iv antibiotics until Saturday but is feeling much better.

Update 25th January 2008

Jayde has had a busy month waiting for her new sister to be born! She eventually arrived 8 days late on New Years Eve. She is called Kyra.

Jayde has been having treatment for her skin condition but so far it hasn’t improved and she has had to spend quite a lot of time off school. Hopefully it will start to get better soon. I’m still not sure if it is because of the new drug she is on.

All the children had some lovely gifts from their elves at Christmas, they will be writing thank you notes over the weekend to all those who gave addresses, but a huge thank you to all of you for taking the time to send these lovely gifts.

Update 1st November 2007

We are still waiting to hear if Jayde can continue on the oral drug instead of her pump. Jayde will be having lots of scans this month in London so it’s going to be a busy month for us.

Update 6th August 2007

Jayde is suffering from bad hair loss at the moment and we are still not sure if it is connected to the trial drug or her skin condition, but we will have to wait and see. Hopefully it will clear up a bit before she starts senior school on 3rd September.

Jayde is busy planning her birthday party for 1st September at the moment and is having fun during the 6 weeks holidays.

Update 2nd July 2007

Jayde is having another good month. She is playing molly in her school production of ‘Annie’ in 2 weeks so has been very busy. Health wise she has been ok, although still getting problems with her legs and has now also got very bad skin which we are waiting to see a dermatologist for as it could be related to her medication.

We have also got some good news to share! We found out we are expecting our 6th child due 23rd December, so Jayde and her brother and sisters are very excited and can’t wait for Christmas this year! Although mummy is a bit concerned about missing her Christmas dinner!!

A huge thank you to all who sent cards and gifts for Jayde’s siblings for their birthdays.

Update 2nd May 2007

Jayde is doing well this month. She is looking forward to starting swimming at school next week (which she hasn’t been able to do previously because of wearing her needle all the time) and she is going to be in the school production of annie! She will find out what part she gets in a few weeks. Health wise, we are going to London tomorrow to get some more tests done and hopefully get results from her last liver MRI to see if the iron buildup around her liver has remained the same or got any worse.

Update 18th April 2007

Not really much change since last month other than we now have our appointment for the bone specialist in July. Huge thanks to Celia and everyone else for the eggs and the twins’ presents.

Update 2nd March 2007

Jayde is waiting to see a bone doctor as she is starting to have difficulty walking far because her legs have become very painful. Other than that her results on the new trial drug have been reasonably ok.

Update 16th February 2007

Jayde is having problems with her legs and is finding walking quite painful at the moment, hopefully her doctors will sort out some tests for her soon to try and find out the problem. Jayde also had another line infection last month so was on IV antibiotics for a while but she is ok now.

Update 3rd January 2007

Jayde would like to say a huge thank you for all the wonderful gifts that she received for Christmas. Thank you from her siblings for the gifts that they received too.

Update 1st December 2006

Jayde is doing well on the trial drug, she has had a rash and bad throat but other than that it seems to be going ok.

Update 1st November 2006

Jayde has now started on a new drug that if works will replace her pump every day, so fingers crossed. She is happy about this as it means she can go swimming a bit more which she enjoys.

Update 4th September 2006

Firstly a big thank you to everyone who sent Jayde cards and presents for her birthday, she will get round to writing to thank those of you who included addresses soon.

We have had a busy month; we spent three days in London where Jayde underwent lots of tests. We are hoping to go on a trial for a new drug which would replace the pumps Jayde has to wear all the time if it works on her, so fingers crossed. Jayde also had her port re-sutured at the start of the month; it is working well at the moment and will hopefully stay that way for a while. Other than this, Jayde has been reasonably well this month.

Update 23rd May 2006

Jayde is booked to go and see a specialist in London this Thursday, should be interesting! She is now on the waiting list to have an operation on her vascuport as it is really problematic and her nurses are having problems accessing it. Hopefully the operation will sort it out or they may decide to give her a new one.

We have been very busy trying to move house recently. Hopefully we move in a couple of weeks (fingers crossed). I have been very stressed and I swear we are never moving house again!

Update 30th January 2006

Jayde got some lovely cards and presents over Christmas, thank you all so much. Also thanks to Anna who has been writing to Jayde’s siblings.

Jayde has only just got the all clear from her line infection (which we could not get rid of, even after several antibiotics) so fingers crossed she will be ok and reasonably healthy for a while.

Update 23rd December 2005

Jayde isn’t very well at the moment due to another port infection. She was taken to hospital via ambulance on Tuesday, but is home now.

Update 8th December 2005

Jayde is still having problems with her port, but other than the odd cold that’s doing the rounds, she has had a good month.

Can we wish everyone a fantastic Christmas and a happy new year and also a huge thank you to Jayde’s elf Celia.

Update 1st November 2005

Thanks to everyone who has sent mail to Jayde this month, also to the people who have been writing to Tayla and Charlie (the siblings really appreciate it too!).

Jayde has had another good month although the problems with her port continue. We have seen her surgeon and will be seeing him again early December to decide whether an operation is needed on it. Jayde’s desferal has been increased as well.

Update 10th October 2005

Jayde is having problems with her port and the nurses are finding it quite hard to access. She has an appointment soon with her surgeon to see if it’s time to change it to a new one. Other than that she has been quite well this month.

Please can we say a huge thank you to everyone who sent cards and gifts for Jayde’s 10th birthday. She is writing thank you notes and you should get them all soon if we have your address. Thanks again. 🙂

Update August 2005

Jayde has had a good month, she’s had her regular transfusion and drugs and is feeling quite well for once!

Unfortunately, her little sister Tayla broke her arm badly at the start of the school holidays, so she has taken over the poorly bunny crown from Jayde for the last month!

Thank you to all the people who have sent Jayde and her siblings some beautiful cards and gifts this month.

Update June 2005

Jayde is still having IV antibiotics for her port infection, we are trying for one more week and if the blood cultures don’t come back clear then its time for another port! Thank you for all the Posty and the sunshine biscuits were fantastic!

Update 3rd April 2005

Every card, letter and gift has been fantastic. Jayde has brightened up since being on Post Pals. She realises it’s not just her family that cares!

Jayde was rushed to hospital on Tues 29th March with a serious line infection in her port, it had been pushed into her blood stream when her was being used and made her very poorly. She is on IV antibiotics for at least 10 days but was allowed home at the weekend. Hopefully the antibiotics will remove the bug from her line, if not she will have to have another port put in, so it’s wait and see at the moment.

Update 31st March 2005

Just a quick note to say Jayde is in hospital at the moment, she was rushed in by ambulance on Tuesday morning. She has a severe infection in her port and is feeling very poorly.

Story written 2006

Jon Paul was diagnosed with Cystic Fibrosis at 13 days old. He was born with perforated bowls, distended tummy; he died twice but was brought back to us. He wasn’t expected to live until he was 3, now he is 15. He also has Cerebral Palsy.

He is fire services mad, loves anything to do with fire engines and has been to New York, San Francisco and Washington to visit their fire stations. He has also been to London and is now a member of the London fire service. He has 209 fire badges from around the world, helmets, T-shirts and lots more. He is also football mad and supports Sheffield Wednesday and plays for the Plymouth Argyle disabled football team.

Jon Paul has to go into hospital for 2 weeks every 3 months for treatment (IV antibiotics) and has a Gastrostomy tube in his tummy, Portacath in chest and splint on his leg for his Cerebral Palsy. Yet through all this he remains positive and likes to help other people, he has a positive outlook on life and will not let his disease get him down.

Update 7th September 2012

We are very sad to say that last night Jon Paul passed away after not getting his transplant in time. During his last year he spent most of his time in hospital but that never stopped him thinking of others, sending families messages reminding them of his motto encouraging them to remain positive and fundraising for Post Pals and the CF Trust. The week before he passed away he was able to leave hospital for a few days to celebrate his 21st birthday with his friends and family.

Update 3rd July 2012

Jon Paul came out of hospital after 6 weeks on Friday but has been read lighted as he was coughing up blood. He has not been allowed home as his lungs are so bad. He really needs those new lungs and in the mean time please let’s try get lots of smiles sent to him.

Update 31st May 2012

Just to let you know that Jon Paul had another call from Harefield Hospital at 2am this morning. We got there at 7am and he had to have a lot of tests but at 2pm we were told it would not go ahead. He is still hoping maybe it will be 4th time lucky. Fingers crossed.

Update 29th February 2012

Jon Paul is expected to come out of hospital this Friday depending on his lung function, so we are hoping it happens.

Update 10th February 2012

Just to say hope you are all well. I am sorry that we have lost one of our Pals, it is always a shame that we have to leave this earth but we all know that God will be waiting for us on the other side. I never thought I would say this but I am beginning to lose confidence in myself, as since the 30th December I been in and out of hospital like a yoyo. I am here again for the next 2 weeks because I have a chest infection. Doctors have said this is how it is going to be from now on, I am going downhill as they say. I want to prove them wrong though, I just need a double lung transplant. When that will happen, I do not know, but I will not give in. Anyway please stay POSITIVE and not NEGATIVE, I am just fed up with being here all the time.

Update 20th January 2012

JP has just come out of hospital this Friday. He had been in since the 30th December. He also now has to use a wheelchair to get around as he cannot get far without his oxygen.

We’re still waiting for a double lung transplant and we’re going to Harefield Hospital this Friday for more tests.

Thank you for sending him post.

Update 2nd November 2011

Jon Paul had a call on the 20th October for a new pair of lungs. When we got there and he had some tests it turned out that the antibodies did not match though, so we had to come home again. However, at least we know what to expect when the phones rings again.

Thank you for all Jon Paul’s lovely post and we hope to do some more fund raising again this Christmas for Post Pals.

Update 4th October 2011

Hi everyone it is nice to be able to email again now that mum has got back her computer and I am ok to use it.

At the moment I have come home from hospital for a couple of hours so am making the most of it. I would like to say thank you to all the nice people who have sent me fire engine magnets and bus ones as it is so very nice of you.

I hope that you are all looking after yourselves, and yes, being POSITIVE about your illness and not NEGATIVE. Please take care of yourselves and I will email again soon but in the meantime I must get back to the hospital for more physio and medication. Bye for now.

Update 28th September 2011

Once again I have been admitted to hospital today as my lung function has gone down and so has my weight, so I am in hospital for the next 2 weeks.

Update 22nd September 2011

Hi Post Pal friends. How are you all doing? I hope that you are all well and looking after yourselves.

I am still fighting my C/F and still on constant i/v treatment (at home though so that is not so bad).

As you all know I love fire engines and I am after some fire engine magnets but I am also looking for some magnets of buses to go on my project that I am working on at school. Can anybody help me please?

Also, I want to say please be positive about your illness and not negative – I know I always say this but I am sure that it helps, so please take care and look after yourselves.

Update 1st September 2011

Hi to all my friends on Post Pals, I would like to say thank you to all of you that sent me a birthday card. I was just happy to be out of hospital for it. I had a lovely day, I went out for a meal with my family on the Sunday at a Spanish La Tasca restaurant. I ate squid and anchovies with white fish and chorizo and also had savoury bread with different oils to dip it in. Quite nice. Then on the Monday I went to Bingo for the first time with my mum but won nothing. My mum won twice and my two uncles won once each but I enjoyed myself.

Also thank you for the cards that were sent to me while I was in hospital with all the nice chocolate that came with them too. I hope that you are all well and looking after yourselves. But as always, please be POSITIVE and not NEGATIVE about your illness, and in the meantime take care and I will message again soon.

Update 22nd August 2011

Hello Post Pal friends. I am just updating you on how I am doing. I am still in hospital but getting a little better. My weight up by about 3oz and lung function is ok. Hopefully I will be out for my birthday next week, but if not I’ll just have to grin and bear it.

Hope you are all well and taking care of yourselves.

Update 11th August 2011

Sorry everyone, I spoke too soon. I have to go back into hospital today as my saturations level has gone down and I have lost weight. My lungs are also not too good either. So my c/f nurse has said I am to go back.

I will let you know how I am getting on or my mum will. In the meantime take care and look after yourselves. Remember be POSITIVE not NEGATIVE about your illness.

Update 6th August 2011

Hi to all my Post Pal friends. Sorry that it has been such a long time but I have been in hospital again for the last 3 weeks (out now though).

Just thought I would let you know some good news. I went to Harefield Hospital yesterday to see my doctors about my double lung transplant. It was only a checkup but they are happy for me as I have been able to put on weight and I now weigh just over 7 stone (51.2 kilos I think), so they hope to see me in another 6 months unless anything happens before then. I am so happy so I thought I would tell you all and I am sure it is because (yes, you know what I am going to say) I REMAIN POSITIVE NOT NEGATIVE about my illness. Please remember this and I am sure it will help you all to cope with your illness.

Update 6th July 2011

Just to say thank you to you all who are sending me some nice cards and gifts. I have been told today that I will have to be in for another 3 weeks. They have changed my medicines around again to see if that will help me, but the thing is I keep being sick and am losing weight again. I will not let it get to me though; I am still fighting it all the way.

My doctors and nurses are a great team and are doing a good job of looking after me, they are more like friends than nurses, but my mum is doing her bit by making them cakes.

I must say thank you to Jenny who sent me a recipe for mars bar squares, the nurses love them so much they have now got the recipe from mum.

Anyway, please take care of yourselves.

Update 29th June 2011

Hi to all my Post Pal friends. Just to let you know that I am back in hospital again as I have got another chest infection, my lung function is very rubbish, and my weight has gone down quite badly, so I guess I need to eat more chocolate.

I am going to be in for about 2 weeks again, but hope to be out by the 23rd July as I am doing a charity football match with all the c/f doctors, nurses and physios from my hospital, and also the physios and the people from MEMS who mend all the machines (I think). The best part is I am the referee and they all have to come as garden characters or they will get a fine. All money raised will go to the c/f trust.

Anyway, I am thinking of you all so please be POSITIVE and not NEGATIVE about your illness. Get on with life as best as you can and do not let it beat you. Take care and look after yourselves.

Update 29th April 2011

Jon Paul is back in hospital again. He has got a very bad chest and Laryngitis. He will be in for 2/3 weeks and he has asked me to tell you that he will remain POSITIVE NOT NEGATIVE and that he wishes you all well.

Update 1st April 2011

Just to let you know that Jon Paul has been told that he is now on the lung transplant list and has been activated. Now all we have to do is wait for the phone call. This is a serious operation (a double lung transplant) so we are pushing all the chocolate and high calorie food into him as fast as we can.

Update 3rd March 2011

Thank you for all the cards Jon Paul has received. He has also had lots of chocolate and gifts from Post Pal friends, including Thorntons chocolates which he has yet to tuck into.

Update 15th February 2011

Hi just to let all my Post Pal friends know that the doctor has decided to keep me in for another week and it will be my fourth. They want me to put on weight as I am not heavy enough (only six and a half stone). They are giving me lots to eat and I must have something every hour to help me get heavier so I’m eating lots of chocolate. Mum said she needs to take out shares in Cadburys chocolate – I tend to agree with her as the more calories I eat the better. My lung function has improved a bit though so I am happy with that.

I hope that you are all well and looking after yourselves despite this horrible weather we are having and in the mean time, please be POSITIVE and not NEGATIVE about your illness.

Update 9th February 2011

Just to say that Jon Paul is still in hospital and I have had to remind him that he must stay POSITIVE as he is feeling really down at the moment and fed up with being ill all the time.

I would like to say a big thank you to all those friends and Pals who have sent him letters. I know that he likes receiving them and enjoys reading them.

Update 2nd February 2011

Just a few words to let you know that Jon Paul was admitted back into hospital very poorly again. He has not even been out 2 weeks yet. He went for a check up and the doctor said ‘I am sorry Jon Paul but your lungs are very bad again so I am admitting you again.’ I am in shock but have to pull on my energy from somewhere to keep him going. I will let you know how he gets on but it could be a long haul for him.

Update 19th January 2011

Hi everyone, just to let you know that I am out of hospital for the time being. The doctors were happy for me to go home, only I have to go back again soon for checkups. I have been given 2 new machines to bring home and mum is just wondering where she is going to put them. One is a Bipap machine to help with my breathing at night time and the other one is called a yanker to help me with my sputum. So I am POSITIVE and not NEGATIVE as I say to you all and I am sure that this attitude is helping me.

I would like to thank all Post Pal friends that sent me get well cards and gifts. I will email again soon but I’m just going to watch the football match on telly now. Take care of yourselves.

Update 27th December 2010

Hi, its Jon Paul’s mum again. He has taken a little turn for the worse. They think he could be in hospital for a month to 5 weeks. He is on a bipap mask to help with his breathing but is still finding it very hard to breathe. His dad and I are taking it in turns to be with him at night as he is very frightened. I will let you know how he gets on.

Update 25th December 2010

Hi this is Jill, Jon Paul’s mum. Just to say thank you for all the gifts from Post Pal friends. Unfortunately, Jon Paul is unable to unwrap them as he has been taken into hospital today (5.30am this morning) and is very poorly. I will let you know how he gets on after Christmas. In the meantime, take care and have a good time.

Update 17th December 2010

Hi to all my Post Pal friends. Sorry that I have not spoken in a long time but I have been to Harefield Hospital to have tests on my Lungs. I am going on the transplant list in mid February to have a Double Lung Transplant but first I have to put on some weight and I am also Anaemic so need some Iron tablets.

I have sent some cards to you and only hope they get to you in time. Well despite this weather I hope that you are all remaining positive about your illness and not NEGATIVE. In the meantime, take care of yourselves and look toward the future. Also have a great Christmas and New Year.

Update 24th November 2010

Hi this is Jon Paul’s mum. I know that he wrote you all a little message the other day but JP was rushed into hospital last night having difficulty with his breathing. He was admitted about 9.30 pm and I don’t know how long he will be in there. I just thought you would like to know if you would like to say a prayer for him. In the meantime from me, please look after yourselves and we will email again when he comes out.

Update 22nd November 2010

Hi to you all. I hope that you are all getting excited for the next month and that you are all being positive about your illness. I am looking forward to this month coming as I will be an uncle and I intend to spoil the baby. First I must go to Harefield Hospital in London though and see about this lung transplant assessment at the beginning of December and then we will take it from there.

I have not been too well this last couple of days and have had a lot of coughing fits. My mum is doing extra physio on me and I am going on the vent also, but hey, I can cope, I think.

Anyway, I just want to say hi to you and wish you all well. My thoughts are with all the people that we have lost on Post Pals and I think of you all.

Update 26th October 2010

Hi to all my friends at Post Pals and just to let you know that I am thinking of you all.

I am in hospital at the moment doing my second week. The doctor wants to keep me in for another week because I have not been very good with my results and blood tests. I’ve got to have more x rays and a scan but I will come through like I do and will not let it get to me.

I hope you are all well and looking after yourselves. Remember be POSITIVE about your illness not NEGATIVE. I will email again soon when I get out of hospital.

Update 14th October 2010

Hello to all my friends. I am sorry that it has taken so long to speak to you, only I have not been well and now I am to go back into hospital again on Monday for more I/V treatment. This is to get me ready for Harefield Hospital which I have to go to in December for 4 days of tests to see if I can have a lung transplant. Apart from that all is well; I’m doing some more fund raising in December for Post Pals so I hope to raise lots of money again.

Well, I hope you are all being POSITIVE about your illness and not NEGATIVE as I always say to you. I think of all my Post Pal friends all the time, so hang in there friends and take care.

Update 30th August 2010

I would like to thank you all for my wonderful birthday cards and gifts. I would like to email the lady who sent me the boot monthly card (my dad thinks it is brilliant), mind you I had a lot of football cards. Thank you for them all.

I have been to Harefield Hospital and have been told I am suitable for a lung transplant but I still have to decide, so I’m busy thinking about it and will let you know soon when I have made up my mind. Until then, be POSITIVE NOT NEGATIVE ABOUT YOU ILLNESS and take care.

Update 16th August 2010

Hi to you all, just to say that I am being discharged from hospital on Friday yeahhhhhhh. Looking forward to going home – it has been a real hard time and I am sorry for scaring my sister and parents and want to say thank you to all my Post Pal friends and to say thank you for all my cards and gifts. Thank you.

Update 7th August 2010

Just to say that Jon Paul is starting to look like his old self again. We still have to stay in hospital for another 2 weeks but he is making progress.

The doctors have said that he scared them and he put the fear of God up me and my husband, but I’m glad to say he has come through the worst of it.

He would like to say a big thank you to all his Post Pal friends who have sent him cards and gifts. He’d also like to say hello to Sarah G to thank her for the fire stuff she sent him and to Bethany who has been nominated as his best friend.

I will keep you up to date on how things go but in the mean time be POSITIVE not NEGATIVE about your illness, as Jon Paul likes to say.

Update 3rd August 2010

Hi this is Jon Paul’s mum again. Just to let you know that we have an appointment for Harefield Hospital on the 27th August for a pre assessment, maybe for a lung transplant. We will have to wait and see what they say but it is also 2 days before his birthday. It will only be for one day but will take some time for all the tests to be done. I will let you know how he gets on. But in the meantime, take care and look after yourselves, and be POSITIVE not NEGATIVE about your illness. I have been told to say this by Jon Paul.

Update 27th July 2010

Jon Paul has picked up a little bit but doctors say it is going to be a long haul in hospital for 4 to 5 weeks. He (or rather I) would like to say thank you to all the kind people and children who have sent him get well cards. I will let you know how we get on soon.

Update 22nd July 2010

Hello this is Jon Paul’s mum. Jon Paul is still very ill in hospital; he is fighting it, but not winning at the moment. He is very tired and just wants to sleep. All I ask is if you can say a prayer for him this will help. I will let you know when he is any better, but as Jon Paul says, stay POSITIVE about your illness not NEGATIVE.

Update 21st July 2010

Jon Paul is very ill in hospital. His breathing is very rapid and he is on a bipap face mask to help with his breathing. He is going to be in for at least 3 weeks and I will let you know when I know more.

Update 13th July 2010

Hi everyone at Post Pals. Just to let you all know that I have to go back into hospital again on Friday (23rd July) because my lung test was at the lowest that the doctor has ever seen it. I said that I will come in next Friday afternoon and then I said to him that after 2 or 3 weeks of iv’s, I will come out of the hospital so fit that he will not know what to say to me.

Update 8th July 2010

Hi I would like to say thank you to the kind person who sent me the Sugglie, it was so very nice of you. Thanks also to the person who sent me the Football Team members of England, it was nice of you. There are so many nice people out there that care. I care for other people even though I am ill myself too. Thank you again.

Update 1st July 2010

Jon Paul came out of hospital 2 weeks ago and decided to do his last lot of IV at home so is getting no sleep because some of them are done at midnight or just after. He is feeling OK but not 100% still and this hot weather makes it harder for him to breathe properly.

He has something to work towards now as his sister is having a baby in November so he will be Uncle JP.

Update 11th June 2010

Just to let you know that JP comes out of hospital next Monday but will have to do the third week of I/V treatment at home. He is looking a little better and has put on about 6oz in weight and his lung function is up to 27% so we are half way there. If we can get it higher he may still get the chance of a lung transplant. Here’s hoping. I will let you know more sooner or later.

Message from Jon Paul: Thank you to all the friends who sent me get well cards and to Helen who sent me a fire bear which I took into hospital with me. I also took my old one but it is getting rather tatty now. I will still keep him though. Thanks to you all.

Update 31st May 2010

Hi this is Jill, Jon Paul’s mum. Just to say that he is now in hospital (went in today). He is not at all well so they have started him on his i/v straight away. It took a bit of time to get the needle into his chest but it went in after the 4th attempt. It will have to stay there for a week then be taken out and another put in the following week. As you all know though, he remains POSITIVE and not negative.

Hope you are all well. Please can you say a prayer for Jon Paul. Normally I would not ask this of anyone, but I am really worried for him.

Update 26th May 2010

Just to let you know that Jon Paul is going into hospital next week for 3 weeks. I will let you know how he gets on. Basically, what the doctor is saying is that his lungs are really bad, so it’s another visit to the hospital, even though he has only been out for about a month.

Update 19th May 2010

Jon Paul is not very well, he has a really bad headache and the doctors are not happy with him again. His sats are down but his weight is up a little. For him to stay home from school, he must be really bad. Nothing keeps him out of school usually.

He went to hospital yesterday and has managed to stay out this time, but has got yet more tablets to take. We will be able to rattle him soon as he has that many.

But he still insists on staying positive and not negative about his condition and he hopes that all the other Post Pals feel the same way. He sends his love to you all.

Update 8th May 2010

Hello to all my Post Pal friends. Just to let you know that the rain held off and the Mayfair went ahead. Mum, Rachel, and I, raised £90 for Post Pals. Hope you are all keeping positive and not negative about your illness. Keep up your good work.

Update 16th April 2010

I am in hospital again as my Lungs are very poorly and I have lost 5lb in weight, so the doctors are not happy with me. I have only been off my IV treatment 3 weeks (which I did at home) and now here I go again! The doctors want me to stay in hospital for 2-3 weeks and try a new medicine.
You all know me though, I will come back fighting and will not let it get the better of me, so if you are ill then hang on in there and do not give in to it. It is fighting talk I know, but what would happen to us if we all gave in to our illness. I know we have our mums and dads to help us, but with POSTPALS we also have each other. I hope you all get well or stay well.

Update 26th February 2010

Hello to all my Post Pal friends and a special hello to Sophie and her sister Jessica. I hope that you are all being positive about your illness and not negative, although I am a fine one to talk like that just now as I am quite poorly again. I’ve only been out of hospital one month and I have got another lung infection so I’m back on IV treatment again. My lung function is only 88, I have lost more weight and my sats are quite low, so doctors are not very happy with me. I will bounce back again though; I am not ready to give in yet.

Apart from all that, I wish to say thank you for all my cards and gifts and hope people like the ones I sent to them. Pease take care and look after yourselves, I wish you all well.

Update 23rd January 2010

Firstly, I would like to say thank you to everyone who has sent me cards wishing me well and to all the other friends who have sent me parcels. I will write to you all in person to say thank you, but this will be when I come out of hospital.

I am hoping that it is going to be Tuesday of next week, it depends on my lung function test and if I have put on any weight. They are giving me this stuff to drink to help with my weight BUT MY GOD IT IS DAMN AWFUL! Anyway, I am alright, so I keep telling myself (as I have said) I am positive not negative about my illness, but hey, I have to carry on and make what I can of my life. I hope if you are ill that you are looking after yourself. I am thinking about you all.

Update 13th January 2010

Jon Paul is in hospital with a sever lung infection and we do not know how long he will be in, but he is hoping it will not be too long. I will keep you updated with how he is. In the meantime, it is my turn to say be positive not negative about your illness as I know that Jon Paul would like me to tell you this, so hang on in there.

Update 4th January 2010

Jon Paul is in hospital with the flu at the moment and has been really poorly over Christmas.

Thank you to everyone who sent him post over Christmas.

Update 17th December 2009

Hi this is Jon Paul’s mum, I know that he would not like me to tell you this but he is under the weather and feeling rough. He has had to go on another course of tablets due to an infection, something to do with the air, and he also now takes 62 tablets a day. As you all know, Jon Paul will not let it get him down and would like to say please remember my motto, think positive not negative about your illness and hope that one day there will be a cure for all lifetime illness we are living with.

Jon Paul would also like to say a very merry Christmas to you all.

Update 17th December 2009

I would like to wish all my friends on Post Pals a very happy Christmas and I also want to wish all the staff at Post Pals a merry Christmas and New Year. You are truly an inspiration for all of us and I am sure that from all of us Pals we would like to tell you that we love you. You are all very good and if we had an award of some kind then you would receive it from us. Maybe someone could come up with an idea but in the mean time MERRY XMAS AND NEW YEAR.

Update 4th December 2009

Just to let you know that tomorrow I will be helping mum to raise funds for you all at the local Christmas Fayre. It might not be a lot as they have forecast more horrible rain but here’s hoping.

Update 21st November 2009

Hi to all my Post Pal friends. I just thought you would like to know that I won the Heart Radio Pride of Plymouth Lifetime Achievement Award 2009 that I was telling you about.

Update 2nd November 2009

Just want to say that today I have been very upset as I went to the funeral of my friend, Kiera. She was only 6 years old but she died suddenly a couple of weeks ago. I was so shocked when I was told as I was only playing pool with her a week before that. I was also told that I was to go into hospital today so that just about sent me in tears, but even though I am 18 I still feel for people, it will not be the same without her being there.

But enough of that, like I always say, be POSATIVE ABOUT YOUR ILLNESS NOT NEGATIVE, but today was a down day for me, so please forgive me.

Update 30th October 2009

Hi to all my Post Pal friends. Just want to share some good news with you. I have been nominated for the top 3 for the Pride of Plymouth Lifetime Achievement awards on Radio Heart! I could not keep it to myself and had to tell you as I am excited. If you listen to Heart radio, then as from the 2/11/09 you can vote if you want to.

I hope that you are all OK but please remember that you should always be positive about your illness never negative.

Well, although I am going into hospital next week for some treatment, I can also look on the bright side of things now.

Anyway, I think of you all and say my prayers for you and hope to hear from some of you soon.

Update 18th October 2009

Hello to you all. I would like to say a big thank you to a lady called Sarah who sent me a lovely letter – it could not have arrived at a better time as I’m feeling really poorly with a bad cough and chest. I think I might have to go into hospital as it really hurts when I cough. This is not like me as I am usually a happy lad, but for some reason I’m feeling down in the dumps and depressed.

Anyway, enough about me. How are my Post Pals friends? I hope that you are all being positive about your illness, although I know it is hard some times, but I find it helps me to be positive not negative and I can get by like this.

Well my mum and I are going to raise more money for Post Pals this Christmas by doing another tombola table and we’re hoping to raise lots of money for them.

In the meantime, take care of yourselves and SMILE at the world.

Update 23rd September 2009

Hi everyone just a quick update to tell you that I have managed to stay out of hospital again this month. I went to the hospital yesterday and the doctor seemed happy with me. My weight has gone down a bit and lung function is still not good, but otherwise I am feeling ok, I’m just not looking forward to winter.

Hope everyone else is doing well, take care of yourselves and be positive about your illness not negative, so I keep being told.

Update 17th September 2009

Hi everybody I just to say thank you for my cards and gifts. Thanks also to Jane and Mark Beswick for coming down to see me in Plymouth. They brought my birthday gift and when I opened it I got a big surprise as it was a real fireman’s AXE mounted on a plaque and it is fantastic.

I would also like to tell you that I have just raised £155 for the Cystic Fibrosis trust. I did a charity football match between the paediatric C/F doctors and nurses and the adult C/F doctors and nurses which also included the physios as well. Next, my mum and I are raising funds for Post Pals in December.

I am also now a level 7 football referee so I am not letting my C/F beat me.

Update 31st August 2009

Hi to all my friends on Post Pals. I would like to say a big thankyou to all who sent me cards and gifts for my 18th birthday.

My first birthday surprise was the gift from my mum and dad and all the rest of my family – they had arranged for me to go to see my football team (Sheffield Wednesday) who were playing Plymouth Argyle and my team won 3-1. Best of all was that they let me be their mascot and lead them onto the pitch. I had lots of football stuff including a signed shirt and signed ball from my uncle, a ring from my nana and lots more. I had 62 birthday cards and some came from Post Pals and I am so happy that people can be so kind. Then in the evening I had a lot of people come to my birthday party and then someone who said they could not come turned up all the way from Kent. That person was one of the fire fighters from London fire service who I met when I was 6 years old through the Make A Wish Foundation. He drove down on my birthday to surprise me and what a surprise it was. Then he had to drive all the way back again the next day as he was on night duty.

All in all I had a wonderful time with all my family and friends. Although I may now be 18 I still hope that you will remain in contact with me and I would also like to say well done to Stephanie and her husband Kevin in Utah who are supporters of Post Pals and have just had a baby boy called Trig. Once again, thankyou.

Update 3rd August 2009

We got to meet up with Jane, Mark and their children, since I last updated. They support Post Pals and they came down to Plymouth and gave Jon Paul his birthday present, which he hasn’t opened yet. He has also received some gifts from Post Pals, so thank you for his post.

Update 30th June 2009

Thank you for all Jon Paul’s cards this month, plus the beautiful quilt he received and the gift of some fire badges and a poster from someone who wants to remain anonymous.

Update 15th June 2009

Hello to all my friends on Post Pals and all the lovely people who made my quilt for me. It is so fantastic that I actually had a weep about it. It is truly awesome and will have pride of place in my bedroom. I cannot thank you all enough, there are some truly wonderful people in this world who help people and I am saying a prayer for all of you. Please take care.

Update 29th May 2009

Many thanks for the post Jon Paul has received this month.

Update 9th May 2009

Although I am in hospital and having I/V treatment today, I was allowed out for a couple of hours so that I could help my mum and friend Rachel raise funds for Post Pals. We have raised £85 by doing a tombola stall.

Take care all of you and look after yourselves.

Update 30th April 2009

Jon Paul will be going in to hospital on the 6th May for more IV treatment as he has an infection in his lungs.

Thank you for all the post he has received.

Update 5th April 2009

Thanks Post Pals for my word search mug, I’m having great joy doing the puzzles. Some of them are hard, some easy, but enjoying them all. They are a good gift and I truly appreciate all that you do for me and the other children who are suffering from illness.

I want to wish all post pals and guests a very happy Easter and may God be with you through all you do this Easter.

Update 31st March 2009

Thank you for my cards from everyone this month, to Percy the Poodle for the letters, and for the badges that were sent from Utah.

Update 28th February 2009

Jon Paul is going in to hospital on Monday for 2 weeks.

He would like to say thank you to all his Post Pal friends for their kindness and is thankful for all the post he receives.

Update 4th January 2009

I would like to wish all my friends on Post Pals a very Happy New Year.

Thank you for the cards and gifts from all the Post Pals friends who sent to me over Christmas.

I am going in to hospital next week as i have been really poorly over Christmas with the flu, but it did not put a damper on anything and we still enjoyed ourselves.

Update 16th December 2008

Just to say that I had a great time in London or should I say Bromley borough of London. I went to visit all my friends at the fire station and had a good time – I even went out on a shout to some people stuck in a lift. Then when we got back I went to inspect all the fire engines and went up in the sky lift. I was well looked after and even got to set some scents for the Fire Dog – he was great and found everything that I had hid away and I gave him a treat (his chicken that squeaks).

We went to see Cinderella in the evening and met the stars of the show and got their autographs and had my photos taken with them. One was Steve Guttenberg from Police Academy and Helen Lederer who was in French and Saunders series on the television. So all in all I had a good time.

I wish you all a VERY MERRY CHRISTMAS.

Update 28th November 2008

Jon Paul has had another C/F Clinic this week are we are not happy about the outcome. The Doctor has said that because he has so much scaring on his bronchial tubes and lungs he is considering him for a lung transplant in the not too distant future. We are optimistic and just have to try and get his lung levels above 30, but JP being JP is always at 26/27 so we just take each day as it comes and try to get on with life.

Update 3rd November 2008

Jon Paul has refereed his first football match and he did very well.

Thank you to everyone for Jon Paul’s post. For every card that he receives he sends a letter back to say thank you for their kindness.

Update 8th October 2008

Just to let people know that Jon Paul is in hospital but doing ok at the moment.

It is good to know that there are so many nice people around that care.

Update 12th August 2008

Thank you to all who sent me cards and gifts while I was in hospital. It was very nice to know that there are such nice people in this world and I truly appreciate all that I received. POST PALS is a great organisation and I will continue to do my best and raise more money for you.

Update 23rd July 2008

Just to let you know that Jon Paul is back in hospital. He is very poorly and he has only been out of hospital a month. We went to CF clinic for a check-up and doctor said his lung function is only 27% and not good enough.

Please feel free to write or email him as I think it would cheer him up. All I can say is let’s hope for the best and get him going on the right track again.

Update 18th June 2008

Just to say I am out of hospital and back at home. I have put on some weight but not a lot. It’s enough to keep the doctor happy, although he said I could do with a bit more being added on.

I am doing my last GCSE exam tomorrow then I have finished school until September.

I am also writing to say that my friend Beki, who is also on Post Pals, is very poorly in hospital with her CF. We have both been on the same ward but are not allowed to see each other because of cross contamination between CF children. I want to ask if every one will send a prayer for her and hope she gets well soon. I speak to her mum every day so she is keeping me informed. Please help her as I know she needs it. I think the world of Beki and she has a lovely voice – when she sings it is like an angel.

Update 4th June 2008

Jon Paul is poorly in hospital again. He had only been out for 5 weeks and now he is back again. He has lost more then 5lb in weight and is very chesty and his lungs sound like a baby rattle.

He is also studying in hospital for his GCSE exams which he is now taking.

He would like to say a big THANK YOU to all his friends who are sending him letters, he is always so chuffed to read them. We are hoping to raise some funds for Post Pals in the near future.

Update 6th February 2008

Jon Paul will be out of hospital on the 11th February after being in hospital for 3 weeks and he is looking forward to coming home again.

He has scared us as he was so very ill. He lost 6lb in weight and has been on 50% pure oxygen for 2 and a half weeks. His lung function has only been at 39% and doctors were really worried about him.

A letter was sent to Great Ormond street to see about a transplant, but Jon Paul being Jon Paul, has pulled himself through again and has shown us all that he will not let his illness beat him.

Update 31st January 2008

Thank you to everyone who has sent me cards, they are brilliant and I love them all. I am still quite poorly and I have to stay in hospital for another couple of weeks but the doctor said it is for my own good.

Update 15th January 2008

I have to keep smiling although I do not feel like it at the moment as I am not very well. My cough and lungs are bad so I have to go into hospital 1 month early. The doctors are not very pleased with my lung condition and are worried about how ill I am.

Update 16th August 2007

Jon Paul has been for his yearly check today. He has lost 8lbs in 3 weeks, plus his chest is very weak and he is finding it hard to breathe, so he is in hospital, he will be in over his birthday which he is sad about.

He would like to say thank you to all that have sent him birthday cards, but he will not open them until his birthday.

Update 12th August 2007

Hi everyone, just to say that Jon Paul is going to be 16 at the end of August and it looks like he will be spending his birthday in hospital, as he is very poorly yet again.

Apart from that, he looked very chic at his sisters wedding in July where he was the chief usher and he had some girls chat him up, but he was not interested in them, typical boy.

He has had some fire badges from Alabama from some fireman over there so that is now 148 fire badges from around the world, but he is still collecting more. Thank you to all the people who are sending him letters too, he enjoys reading them.

Update 4th June 2007

Jon Paul now has the job of being a referee for the football team he plays with. He has his own referee outfit, whistle and plays by the book.

Although he is still fire engine mad he is finding it hard to hear from any firemen.

Today he has been admitted to hospital as he is very poorly. He is expected to be in for at least 3 weeks. Apart from that, he is still fighting and says that the C/F will not get the better of him. Keep up the good work and blessings to all of you.

Update 5th May 2007

Just to let you know that I did not go to Lourdes in France as my doctor said I needed oxygen and it was too late to tell the air line we were flying with. I am feeling well at the moment and I am now looking forward to July when my big sister gets married, as I am going to be chief usher. First I have to do a 2 week course of antibiotics in hospital to get me in good condition.

I’d like to say thank you to all the people who have sent me cards and gifts.

Update 5th April 2007

I would like to wish everybody, especially all those nice people who send me cards and get well wishes, a very happy easter. I am fine at the moment, although have just spent 2 weeks in hospital, but am on oxygen at home now. Next week, fingers crossed, I am going to Lourdes in France with the Royal Navy group and I know I will have a good time.

Update 22nd March 2007

Jon Paul is in hospital and is on 50% oxygen, day and night. His lung function is only 84% at the moment and he is feeling very down about having to go in so early. He has only been out 8 weeks and was not due to go in again until the middle of April, so he is feeling upset. It’s best to get it over and finished though or he will not be able to go to Lourdes for Easter with the HCPT group.

Update 8th March 2007

My consultant wants me to go into hospital 2 weeks early, even though I am not supposed to go in until the end of April, as my chest is very crackly and my breathing is not too good.

Update 8th February 2007

Jon Paul would like to say thank you to everyone who has sent him cards and gifts.

Story written 2005

Ryan was diagnosed with cystic fibrosis when he was four weeks old. Medication and physiotherapy began straight away. Ryan kept fairly well as a baby and toddler, having only a few hospital admissions with chest infections. When he was 5 years old he had to have surgery for Intussusception (collapsed bowels), his appendix was also removed. His chest infections came more often so he had a chest port-a-cath inserted for easier intravenous access.

Abdominal and constipation pain continued and following a year of tests Ryan had more surgery a few years later. Adhesions from his bowel were removed, bowel rotated and his gall balder was removed. Due to a deterioration in his health a gastrostomy tube was fitted in his stomach for over night feeds.

Over the last 3 years Ryan has gone from strength to strength. He has begun to catch up with missed school work. In 2003 he won a Cystic Fibrosis award for showing real determination at fighting CF. Ryan now has IV’s every 3 months via his portacath.

He is a fantastic boy with a great smile and awesome sense of humour and loved a whole lot by his family.

Update 21st September 2012

Over the last few months Ryan has not maintained his usual high lung function. He has had a few courses of IVs but has become unwell again within a week. He has grown some nasty bugs recently and is having high doses of antibiotics. He is currently being seen in clinic every 2 weeks and if his lung function is still low next week he will starting another course of IVs. After this course he is starting a Tobi Inhaler as he is having reactions to all nebulised antibiotics and currently has no daily cover for Pseudomonas. The colonization of Pseudomonas in his lungs is probably the reason for his low lung function.

Apart from all this going on he recently enjoyed a weeks holiday in Tenerife with his girlfriend. He has gone back to College to study year 2 Media, Photography and to re-sit his English Exam again. His driving has gone very well and he is already looking forward to his new car next year.

Ryan is now 18 and we feel it is time to move on. As a family we would like to thank everyone for their gifts, letters etc, to Ryan, his older brothers Jason and Shaun, and to Jasmin. They really did bring a smile to their faces.

Update 1st March 2012

Ryan is struggling at the moment and has been on IV antibiotics for the last week with another week to go. It’s his first course since September 2010 and it has really knocked him sideways. At the hospital yesterday his lung function had slightly improved so fingers crossed things are getting better for him. It does mean he has had to take considerable time off at college… so he will need to catch up. The family are supporting him as much as we can.

Thank you for Ryan’s birthday and Christmas gifts and cards… sorry this is very late. Special thank you for the lovely letters received form the young ladies from the Netherlands over Christmas, they were very touching.

Update 10th August 2011

Ryan has kept very healthy with his chest and had no IV’s since September 2010 which is fantastic. His appetite has improved since having his Gasostromy removed as well.

Today we went for his Annual Review results… his Liver function is now normal as his liver has had time to repair since not requiring so many IV courses. His vitamin levels were low so he needs a higher dose of vitamins. At clinic today his Lung Function was 124% but his weight has dropped despite eating well. His Glucose levels were very high though despite fasting for 12 hours. He has had a Glucose test and we get the results next week. It is suspected that Ryan has CF related Diabetes and this could also explain the weight loss and fatigue. It would mean him possibly needing insulin and tweaking his diet a little.

Ryan has now completed his first year at college. He returns in September for Year 2 of Graphics and to start Media (which he had to give up last year due to illness).

He is enjoying driving his car and even took a trip to Blackpool in July driving 6 hours each way… leaving a very worried me at home!!! We are looking forward to a family holiday in Ibiza next week and as Ryan has been so well he is going to really be able to enjoy it.

Thank you to everyone who continues to send Ryan and Jasmin post as it really does make them smile.

Update 26th January 2011

Ryan had a very healthy Christmas (the first one in years) and he is doing very well at the moment. His new portacath has yet to be used!! He is maintaining his weight without the night feeds, he is drinking lots of hot chocolate and usually has 3 pints of milk a day.

His driving is going really well too and he is a very careful driver. Ryan retook his GCSE Maths and passed gaining a C and he is still working towards his GCSE English retake. He is enjoying his Graphics course and generally life itself. He has CF clinic next week when I’m sure they will be amazed by his good health.

Thank you to everyone who sent cards and gifts for Ryan’s birthday and for Christmas. Jasmin also received some very nice things for Christmas. Special thank you to Ryan’s Elf, Emma, the gifts were great. Thank you to children from Darrick Wood School, Harry and Sam for the lovely Christmas cards to Ryan and for taking the time to write him a message. Jasmin loved the gift sent from Rachael Harper and all the family, her little face shone when the confetti fell out of the card as she opened it.

Update 4th November 2010

Ryan passed his driving test first time!!! He has his brand new Ford Fiesta Titanium car and is really happy. He has dropped Imedia at college as he got too far behind, but he will take it up again next September. For the time being he is concentrating on Graphics and retaking his GCSE English and Maths. Ryan also has a lovely girlfriend who is just as shy and quiet as he is.

Health wise Ryan has had one month with no night feeds and he appears to be holding his weight, it must be all the McDonalds he has been eating (even for breakfast). He will be weighed at Clinic again in December. His chest is clear and all his medications have stayed the same, fingers crossed he has a good winter.

Thank you to everyone who has sent Ryan and Jasmin post in the last month. The Halloween gifts were wonderful. I’ve not listed specific thank you’s as I’m recovering from surgery myself, so it is just a big thank you to everyone.

Update 7th October 2010

Ryan had a great start to College and settled in well. However he had to have 2 weeks off due to a chest infection and to have another course of IVS which hit him hard. He has been advised to drop Imedia but he is determined to catch up. He finished his IVS yesterday and at the moment is on a 2 month trial of having no overnight feeds to see if he can maintain his weight and hopefully have his Gasostromy tube taken out. I’m a bit unsure of this… he has had it in situ for 8 years now and it has helped him with his weight immensely and taken a lot of pressure off when he has been ill and had no appetite.

However, as a 16 year old, he doesn’t like the button in his tummy and emotionally he is down about it.

Ryan has his driving test on the 25th of this month so please cross fingers that he will pass.

Thank you to everyone who has taken the time to write and send gifts to Ryan and Jasmin as it means a lot.

Update 2nd September 2010

Ryan has now left school and had a very healthy summer holiday. He has been able to go out with his mates, go cycling, and swimming. We had a great holiday in Derbyshire where we used the Alton Tower Tickets from Post Pals (thank you very much for them).

Ryan got his GCSE’s he needed to get into college… he worked so hard and it paid off. He has to retake English and Maths at college and is doing Graphics and media which he wanted to do. He had an Enrolment day today and starts College on the 9th.

In July Ryan had his portacath replaced and was in hospital for 2 days. We haven’t had to use the port yet but it flushes through very well. Ryan has also left paediatric clinic and is now at the CF Adult Clinic (although I still see him as my little boy!). At his last clinic appointment last week his lung function was 120% which is wonderful. The new nebuliser and treatment is obviously working. However, today Ryan has started coughing with a troublesome dry cough which is a reaction to the Tobi nebuliser, so we have to stop that one again.

Ryan has passed his Driving Theory test and has his practical booked for the end of October, his new Ford Fiesta Titanium is on order and he will get that at the end of October also… so all fingers crossed he passes!!

Thank you so much to everyone who has sent post cards, letters, gifts and especially the many many keyrings from all over the world to Ryan. All have been very greatly received and Ryan has been overwhelmed with everyone’s kindness. Too many names to mention and I would hate to leave someone out, so THANK YOU TO EVERYONE!! Jasmin is also enjoying receiving the many parcels that come through the post addressed to her.

Update 8th June 2010

Ryan’s IVS has been extended for another 7 days as he is still very chesty and productive. His lung function has improved though so hopefully another week will see him well again. Despite feeling very poorly this morning he struggled into school for an hour to do his English exam and came home to go to bed.

Thank you for everyone who has written and emailed him wishing him luck in his exams. This week is going to be pretty tough going for him now, especially as he is poorly.

Update 30th May 2010

Ryan is currently on a course of IVS for a chest infection. He was struggling with his chest and finding breathing difficult, especially when he was walking and had a chesty cough. At the hospital his lung function had dropped and his chest sounded crackly. They started a 2 week course which ends on the day of his first exam, so hopefully he will be well for his exams. A long line was put into his arm as he is still waiting for his new Port- a -cath… this operation has been provisionally booked for the 7th July.

Ryan managed to go into school on the last day of term as it was his last full day apart from going back for exams. This half term will be spent revising and resting.

On 4th July, Ryan’s 17 year old brother, Shaun, is doing a Tandem skydive in aid of The Cystic Fibrosis Trust so we are all looking forward to that – I think I will have my eyes closed though!!

Thank you to everyone that has sent mail, gifts, letters, postcards, keyrings and things to Ryan and his sister, Jasmin. Ryan still has a few to open and I will list specific thank you’s next month.

Update 4th May 2010

Following Ryan’s last course of IVS he has kept remarkably well. At the hospital last week his chest was clear and his lung function was back up again. He had also put weight on so that was another XBOX game bought for him.

Regarding his new Portacath, we saw the consultant during the Easter holidays and Ryan is now waiting for an appointment for a scan to see what party of the port is blocked. If the line is ok he will have a new port attached to it, but if the line is blocked he will need a complete new port and line. The scan will also see if the new port could be put back in his right side of his chest or not.

Ryan’s next course of IVS is due the end of May but we are hoping this can wait until after his exams and finishing school at the end of June. Hopefully his new port will be put in then too. If there is any sign of Ryan going downhill again I have to contact the hospital and IVS will be started with a canula in his hand. We must keep him as well as possible as June is going to be pretty tough going for him during his exams. Ryan has 10 hours of GCSE Art exam this week so fingers crossed he copes.

Ryan has had to stop all nebulised drugs again as they leave him with a very annoying persistent dry cough despite using ventolin prior to the nebs. This is the first thing the Adult Team will address when he changes over into their care after June. He has already met the Adult team and although it will be sad to leave the comfort of the children’s team, I am sure he will be well looked after. I think I will struggle more though when he finally sees the Doctor without me being present.

His driving lessons are going well and his instructor says he has a natural flare in driving. In a few weeks time I hope to be able to order his Fiesta as this can take 2 months to be delivered.
Ryan has received lots of mail this month. The postman to the address used has been bringing it by the bag full. His keyring collection is going well and he is getting them from all over the world. Jasmin is not being forgotten either.

Thanks to the following, Elizabeth Eckardt (USA), Jane Kirby (Woking), Patricia, Samrana who sent a gift to Jasmin (W.Yorkshire), Sarah G, Jane Saddleworth, Kirsty A, Clare Carrier (London), Caroline, Dan & Max Evans (France), Richard, Selena, Sylvia (Staffordshire), Amy (Italy), Vauxhall Cars, Charlie (Derby), Ruth (Dorset), Robert, Edwards Family (Aberdeenshire), Antony, Alice, Peter (London), Nick Sheppard (Perterborough), Nicky Merrick (Wallasey), Steph Hunter (Lancashire), Penny (Merseyside), Jenny (Penzance), Kristine Cirillo (US), Leona Tyrie (Scotland), Pamela Fuller, Amanda (Lanc), Alex Rose (Bucks), Maria (Hampshire), Ray (Greenwich), Wilma (Netherlands), Margaret (Boston), Chris (Gloucester), Georgia (Dereham), Trev (Italy), Margaret, Nick, Mayce, Christine Proctor (Bristol), Ashlea, Jennie from Deva Travel, Amanda Stemp (Surrey), Charlotte (Surrey), Phil Vicki & Ella (Berks), Margaret Greenberg (Boston), Laura (Estonia), Patricia, Susan (Glassgow), Maz (Scotland), Sarah Clarke, Despina, Sue (Derby), Toby & Zoe Gibson, Helen King, Ryan & Vicki (Edingburgh), Catherine White (Glasgow), Lee, Claire Chapman, Ellisha (Portsmouth), London Symphony Orchestra, Megan H & Beth, Ms Harvey, Jason & Helen (Darlington).

Special thanks to Grannie Ruth who writes to Ryan and includes Jasmin also – such kind words. And to Ema Kelly for that fab glass one off edition keyring. Ryan has received so many wonderful things, too many to mention, so please accept our heartfelt thanks. Ryan is studying hard for his GCSE at the moment but he has chosen a few letters to reply to but there just isn’t time to reply to everyone.

Thank you also for the tickets to Alton Towers, the whole family will be making a long weekend out of it in the summer holidays.

Update 8th March 2010

Ryan’s last course of IVS was extended another week as he was still chesty and his lung function wasn’t high enough. After two weeks of IVS his chest portacath stopped working completely resulting in him having to have a canula in his arm. Luckily, his veins are a lot bigger now and this lasted the rest of the course. After 22 days of IVS his chest was clear and his lung function much improved so his consultant stopped them. Ryan is waiting to be reviewed for a new portacath and he has an appointment after Easter. Ryan’s GCSE’S also start after Easter, so his operation will have to be fitted in around his exams. We are hoping this will be before his next course of IVS is due.

Ryan started back on his nebulised antibiotics, using ventailin as well, to try and stop him coughing, but sadly after the second dose he was coughing non stop for 24 hours. As he has had this reaction again, the nebulised drugs have been stopped, but now he has nothing to keep pseudomonas in check. Ryan managed 4 and a half days at school last week, but we had to collect him as he fell asleep at school whilst having his physio. He was shattered after having 6 Science tests in 2 days!!

Ryan is doing well with his driving lessons and is eager to get his car.

Ryan’s keyring collection continues to grow with some wonderful keyrings. Ryan has also received keychains, Top Trumps, Books and Games. The local post office thinks Ryan is very popular!! Special thank you to… Liz (Nasville), Wendal, Grannie Ruth (Newcastle), Kate Dee, Maria Carney (Co. Durham), Arlene McGuiness (Renfrewshire), Jean (Essex), Linus Harrison (Wales), Tracy Welham (Bury St Edmunds), Karen (New Zealand), Sadie, Ben, Ella and Lily, Fearne Cotton, Jane (Saddleworth), Angry Owl (Canada). Jasmin also received some lovely books from Samrana. These gifts have really helped lift Ryan’s spirits as he has had a tough time of late. And our heartfelt thanks go to everyone.

Update 1st February 2010

This school term hasn’t been a good one for Ryan so far. I think he has managed 2 weeks so far. First of all he had a reaction to his Nebulisers he started at the beginning of January. He was sent home from school and we waited to get a lower dose for him. The lower dose left him a little shaky still so he stayed at home for the rest of the week until it settled. He returned the following week only to be sent home again on the Wednesday feeling very rough and short of breath. He was having an abdomen scan the following day so I took him to see his consultant for a check up just in case. His lung function had dropped by 30% and he was getting very short of breath. He was coughing up a lot of green mucus so the only thing that could be done was more IVS, only two and a half weeks after finishing his last course!! I do his IVS at home to avoid having him admitted. That was last Thursday, 4 days ago, he is showing slight improvement but still has a nasty cough and shortness of breath. He is sleeping a lot which is good as he obviously needs the rest. I have contacted his school and asked for extensions on all his coursework as they had to be in today but it’s just not possible. It is a high possibility his chest Portacath is packing up… pushing his IVS through is getting harder by the day but as he is in no discomfort I am continuing with very sore thumbs!! His port has been in for 6 years so it has done well but I will get it reviewed when we see his consultant again next week.

We had good news though regarding his scan, everything looks normal despite raised liver levels on blood tests, so that is a great sigh of relief.

Ryan also started having driving lessons – he has managed to fit in 2 so far in between feeling ill and he is really enjoying it.

Jason and Shaun had their CF carrier test results back and Jason is a carrier whilst Shaun is not. Jasmin will be tested if she wants to when she is 16. Jasmin is finding it hard at the moment as she is so worried about her big brother. It’s a lot for her to take in (she’s only 7) but we are supporting her all we can.

January has been a great month for post for Ryan. His key-ring collection is growing by the day. He has received 39 key-rings to date. These include The Simpsons, Dices, Robots, Cars, Snoopy, Mickey, Bendy men, Globes, Lizards, The Rise of the Argonauts,Mandarin Oriental key-rings, Chicago keyring, Wales keyring, fancy Singapore ones and many more. Ryan has also received other gifts as well and Jasmin hasn’t been left out either. And each parcel had some lovely letters for Ryan which really touched us all.

Many thanks to all the following people… Christine (New England), Casey (Manchester), Lawrence Family (Warks), Jane (Oldham), Mrs Welham (Bury St Edmunds), Jordan & Reece (Middlesbrough), Christine Waller (USA), Henry & Mary Johnson (Houston), Marjolyn (Netherlands), Jane (N.Yorkshire), Jayne (Dorset), Yang, Mark, Jackie (Nashville Tennessee), Hwee Hoon (Singapore), Kerri Langley, Helen Brierley (High Peak), Helen, Frazeypie (money saving expert comp forum), Emma Stone (Cheltenham), Leslie Phillips (USA), Sara Jo Buffington (Chicago), Natasha Dan (London… the Top Gear annual was great), Jane Beswick (Saddlesworth), Wendy Jordan (Staffordshire), Tam (Tokyo), The Newmeyers Family (USA). Our intention is to write and thank all those who sent their address but please bear with us. Your kindness means a lot and I know it has helped Ryan over the last few weeks.

Update 18th January 2010

Ryan has received keyrings from Coventry, High Peak, Cheltenham, USA, London and Chicago!! We’ve also had some lovely letters/cards and gifts for Jasmin too. Thanks Post Pals and everyone who sent them… He is SMILING!!!

Update 3rd January 2010

Ryan managed to recover in time for his 16th birthday and his Dad took him and a few mates out to the Cinema to see Avatar followed by a McDonalds (only thing Ryan enjoys eating at the moment). After that, two of his mates stayed over and they played on the Xbox for most of the night. Many thanks to everyone who sent birthday cards and wishes to Ryan.

Ryan also had a great Christmas Day and was in high spirits. We had his Nan and Grandad over for the day and he was his usual cheeky self. However, on Boxing Day Ryan coughed up some blood. It was only a small amount so I decided just to monitor him giving him extra nebulised drugs. That evening Ryan started coughing up lots of blood accompanied by chest pain and getting really stressed. I contacted the Children’s Assessment unit and was told to get him to hospital as soon as possible. We have unlimited open access to the hospital so it saves time as we don’t have to go through A&E. After an x-ray and doctors examination, Ryan was admitted to hospital. His port was accessed and IVS were started. The doctor said the blood was most probably due to inflammation and infection (Ryan’s lungs are colonised with Pseudomonas plus he had a Streptococcus pneumoniae infection).

Ryan was comfortable during the night despite still coughing up blood. He was discharged the following evening as I can administer his IV antibiotics at home for the next two weeks. The blood stopped after three days but at every cough we all make sure Ryan is ok. He has a follow up appointment in a week’s time. Coughing up blood is quite common in patients with CF, however this is the first time it has happened to Ryan and it’s very scary to be honest. We’re hoping to get a few answers at his review.

Special thanks to Lucy Clark for being Jasmin’s Elf. She loved all the things you sent. Eeyore has pride of place on her bed. Thank you to Tez for Ryan’s gifts, he looks really cool wearing them. Thanks to everyone who sent Christmas cards as well.

Update 5th December 2009

Ryan had a very good review at CF Clinic on Monday – his lung function was 110% which is wonderful. However he is now in bed ill with flu like symptoms again, only 2 weeks after getting better from his last bout of Flu. This is a real blow as he already has so much work to catch up on at school and if he cannot return to school next week it could mean he won’t be entered into his GCSE’s.

He needs lots of support at the moment as do we. We are totally gutted that he should be ill again so soon.

Update 1st November 2009

Ryan has been very poorly with Swine Flu. He spent a night in hospital and then I cared for him at home. Prior to him getting swine flu he had been on IVS for 2 weeks due to a chest infection and off school. Two weeks on he is recovered but has been left with a very troublesome viral cough which goes on for hours at a time and is very stressing for him.

He has had some input from his psychologist as he has been feeling very down but we are hoping this will lift. Last term he only managed 2 weeks out of the seven weeks in school and there is a lot of missed work and he is behind in his coursework. I came out of parents evening in tears worried about how much schooling he has missed over the last 7 weeks. The school are being very supportive and he has been given a personalised timetable leaving out Ethics, Citizenship and English Lit so that he can concentrate on his core and chosen subjects. Ryan has not been entered into his GCSE English Lit as he is so far behind in the coursework.

At a meeting in school with all agencies involved, everyone was confident that with support Ryan can catch up, and he has chosen his college for next year and his course, Imedia and Graphics with the possibility of retaking English. He so badly wants to achieve, yet knows his CF is holding him back.

However, Ryan is looking forward to starting driving in December after his 16th Birthday and getting a car as soon as possible. Let’s hope he can stay well to enjoy his birthday and Christmas.

Thank you to Post Pals for the tickets too Legoland, we managed to go during the half term holiday. Ryan was rather worn out by the end of the day but we all had a great time.

Update 26th September 2009

Ryan had a fairly mixed summer health wise. He had a course of IVS as his summer holidays ended, due to another chest infection.

All through the summer he had a dry non productive cough that kept coming and going, resulting in numerous hospital and physio visits and his hay fever also played him up at times. Ryan alternates 2 nebulised antibiotics monthly and it appears that one of these is causing the dry coughing so we have to discuss this with his consultant next month.

Ryan has managed one week back to school and is off again with a bad chest infection and on a 2 week course of IVS which I am doing at home. He has also lost quite a bit of weight which isn’t helping him fight off his infection but his appetite has completely gone.

We changed hospitals as well this month as he now goes to a specialist hospital for the Adolescent Clinic. Ryan was looked after very well when we were there the other day sorting his IVS out, I can’t fault them. So once again my kitchen looks like a hospital treatment room but as long as we can get Ryan better it’s a small thing to live with.

With this being his GCSE year, he will get back to school as soon as he is able.

Many thanks to everyone who has sent him post.

Update 30th June 2009

At present Ryan is struggling with a cold and is off school. We are waiting on a cough swab result but he has developed a loose cough today, so it looks like he will be having a course of Intravenous antibiotics again which isn’t going to be too good in this heat.

Update 16th March 2009

Ryan has been very poorly over the weekend. Today he has started on a course of two intravenous antibiotics for two weeks. His latest cough swab showed he had a heavy growth of Pseudomonas and he obviously wasn’t coping too well. We have managed to keep him out of hospital as I’m doing the IVS at home.

Any extra post would be most welcomed as he will be off school for the time being.

Update 1st March 2009

Ryan has had his Glucose intolerance test and another Liver scan. He has an appointment next week when we are hoping for the results.

Ryan has missed quite a bit of school in the last few weeks as he has been feeling poorly with a sore throat and has a chest infection. He is possibly starting a course of Intravenous antibiotics next week to get him back up again.

Thank you to Tez who sent Ryan some lovely gifts and a letter. Also thanks to Post Pals who sent Ryan a gift and a lovely Teddy for Jasmin it was very kind of you.

Please could anyone that writes or sends gifts enclose their Email address as Ryan is not one for writing thank you letters except on a computer!

Update 17th January 2009

Ryan’s annual CF review went well. He has put weight on (another xbox game earned!) and grown in height. All bloods were normal apart from his liver function which we were expecting as he has mild liver disease. Another liver scan has been asked for to see if this has progressed. Ryan’s lungs remain colonised with Pseudomonas, which is upsetting as this bug damages the lungs quite rapidly if left untreated. It was decided that the pseudomonas would only be treated with intravenous antibiotics if it became a moderate to heavy growth (determined by regular cough swabs) or if Ryan becomes unwell. Ryan remains on nebulised antibiotics to help keep the pseudomonas at bay. This will be regularly reviewed by the CF team. Ryan has mild clubbing of his fingers which is a side affect of cystic fibrosis. He has to go for a bone density test and Glucose tolerance test as he is now at an age where some are diagnosed with Diabetes and osteoporosis. But we will deal with this if and when Ryan is diagnosed.
So the review was a bit mixed with good weight and height gain and a few lows. As usual Ryan remains his happy go lucky self and straight after the hospital we were in Tesco’s buying his XBOX game as a reward!

Ryan’s next hospital appointment is at the end of this month at another hospital as we have to plan for his transition to an Adolescent CF Clinic.

Jason and Shaun have their Genetics Counselling and tests next week to see if they carry one of the two genes that Ryan has… fingers crossed they do not.

Update 15th January 2009

Ryan had a great birthday and Christmas and he was very well.

Today he has his annual CF review so fingers crossed all is ok.

Wow what a lot of post Ryan and his siblings received for Christmas! Special thanks to… Post Pals, Julie, Santa’s Elf Helen, Rachel, Christmas Elf Alison, Howard Elves, Sarah, Carl and Mason, Shaun’s Elf (sorry no name was given), Alina, Hwee Hoon and Aled G and family. I hope i haven’t missed anyone out and apologies if I have… I will be thanking those who sent their email address personally. Jasmin was really pleased with the cards and letters from the reindeer too, she squealed with delight! I have sent photos of the children for the gallery. Thanks also for Ryan’s birthday cards and gifts!

Update 8th December 2008

Ryan has had 2 weeks off school due to his recent chest infection but he now appears to be on the mend. This course of IV antibiotics finishes tomorrow. Fingers crossed he will go back to school the next day.

Ryan is very much looking forward to his 15th Birthday and Christmas.

Update 25th November 2008

Ryan started a course of two strong Intravenous Antibiotics last night for a heavy growth of Pseudomonas. He just can’t shift that infection and he is feeling very poorly. He is off school again and possibly will be for the next two weeks. I’m certainly not sending him back too soon with all the bugs going around at the moment.

Any extra post or smiles would help lift his spirits and hopefully we can get him back fighting fit in time for Christmas.

Update 5th November 2008

Ryan is doing very well at the moment considering he had flu a couple of weeks ago. He has a hospital appointment this week so fingers crossed all tests are clear.

Update 2nd September 2008

Ryan has had a good summer and enjoyed our holiday in France, although his lungs remain colonised with Pseudomonas. He is back to school tomorrow and really looking forward to his options he is taking for his GCSE’s.

Thanks to everyone who has written and sent gifts this month, especially Julie.

Update 1st June 2008

Wow what a great month for post Ryan has had and it really helped bring him up this month. After his last course of IVS and being poorly, a week later he contracted another chest infection (a growth of Aspergillis) which he has never had before and it really knocked him down. He was off school again for a week and very poorly. He has had a good rest over school half term and we are hoping he can continue in school until he breaks up for his summer holidays! Ryan goes back to school tomorrow and is starting a new Year group (10) working on his options which were Art, Graphics, Media Studies and IT. He is so glad he no longer has to struggle with French and Spanish.

Special thanks this month to Jade Boyd who sent gifts to Ryan and his siblings, it was very kind of you. Also thanks to Helen (a crafting friend) Jane, Angel, Cathe Garnett and to Julie, all the things you sent Ryan whilst he was poorly were gratefully received. Sorry we’ve not got round to thanking you all personally. Hope we didn’t forget anyone and if we did, apologises and thank you.

Update 30th April 2008

At the moment Ryan is very poorly with a chest infection. He began his IVS last week after having a reaction to some oral antibiotics he was taking. He went back to school yesterday but was sent home after only a couple of hours. Today he has been sleeping most of the day, just waking for his treatments and a little bit of food. The antibiotics he is having are strong so they should kick in soon and hopefully we will see an improvement. At his clinic last month Ryan had lost weight so we are rather concerned about this too… I have blackmailed him saying that if he puts weight on he can have the new Grand Theft Autos game for his XBOX. I’m really hoping he is well enough for school next week as he has his SATS… but if not, then never mind, Ryan’s health comes first.

Thank you to the person from Israel that sent Ryan the jumper, it looks great! Thank you also to Julie for her continuing letters and gifts, Ryan really enjoys reading them all. Ryan was really pleased to receive the parcel from Post Pals… he says the keyrings were fab. Thank you for everyone who sent things to Jasmin for her birthday too, she was very pleased.

Update 27th February 2008

Ryan had his annual CF review last week and got a glowing report. His weight and height is up. Sat levels are high and his lung function was 98% which is excellent as his chest is colonised with ‘Pseudomonas’. Even his liver function is normal now as he has fewer courses of IVS, which has allowed his liver to repair.

As for Ryan, he appears a lot happier, more confident and a cheeky teenager… with the odd grunt! He has chosen his career… when he leaves school he wishes to do graphics and design computer games and we will support him all the way!

It’s still hard work caring for Ryan… endless amounts of drugs and physio to keep him well, but all his and our hard work is definitely paying off and we hope this continues.

Update 9th January 2008

Ryan managed to dodge the “Flu” that I and two of his siblings had leading up to and over Christmas which was a good thing (good job he’d had his Flu jab I think). He has a dry cough at the moment and is a bit wheezy but i think it is just down to the damp weather, but I will monitor him. His IV’s are due this month sometime and he has another appointment at the Teenage Cystic Fibrosis Clinic at the end of the month. We’re just hoping that this very good patch he is having continues through the winter months.

Ryan had a great birthday and we hardly see him now as he has an Xbox to add to his Computer, psp, Ps2 and Gameboy in his bedroom!! We had planned to have some of his mates sleep over but with the majority of his family in bed with flu we cancelled this.

Thank you to everyone who sent Christmas Cards to Ryan, Jason, Shaun and Jasmin. Jasmin particularly loved the cards from each of the Reindeers with their special Christmas messages to her. She received the last one on New Years Eve from Rudolf. She had so much fun opening and reading them.

Thank you so much to the Elves Sarah Hine, Pete, Mady, Lewis and Jenna… your lovely gifts and kindness were very much welcomed. Special thanks to Kirsty A (a Post Pal) for Ryan’s gift.

Update 14th December 2007

Ryan had his CF Clinic on 7th Dec. His weight and height has gone up so we are now allowed to drop another night feed. He is now having a litre of feed over 12 hours, 5 nights a week, which is great for Ryan as it gives him the weekend off.

Despite having Pseudomonas still growing in his lungs, his lung function was 100% so his body is coping well. We are very pleased with his progress indeed.

Don’t know how long this good patch will last, and of course Ryan is still having a lot of medication including antibiotics and nebulised drugs and his chest physio therapy 3 times a day… but it’s certainly going to be a very happy Christmas for us this year.

Update 3rd December 2007

Ryan has been doing really well. He is about to choose his options at school and is very excited that after this school year he can stop doing French and do subjects he is interested in e.g. Art, IT and Graphics!

The CF Nurse is coming to see him this afternoon as over the weekend he has developed a chesty cough, the first in quite a few months. So it’s probably a good thing that his regular Intravenous Antibiotics are due this month. He has CF Clinic this week too.

Ryan is really looking forward to his Birthday on 21st December and of course Christmas.

Thank you so much for Julie’s continued support – Ryan really loves your letters and gifts. All the letters are in a special treasure box.

Update 1st October 2007

Ryan has just finished a course of Intravenous antibiotics. This time he had 2 weeks off school as he suffered side affects from the large doses. At present he is very well and already looking forward to Christmas and his birthday.

Update 30th July 2007

Ryan is doing very well. He got a glowing report from The Teenagers CF Clinic… his first visit to this Clinic. So good that we are hoping Ryan can miss next months course of IVS so his school holiday activities are not disrupted… just waiting on his cough swab results. Really hope this extremely good patch can continue for a bit longer, so fingers crossed. Ryan is enjoying the school holidays and the lie-ins!!

Ryan and all the family went to an air show last week arranged by The Starlight Foundation. It was a great day out and we are very privileged to have been invited.

Update 4th June 2007

Ryan is currently on a course of IVS for Pseudomonas again. It’s a bit harder this time as we think his port is packing up… so his arm is a bit painful and he had to have the port accessed twice in 6 days. It’s likely he will need surgery for another port in the near future. At May’s CF clinic Ryan had put on quite a bit of weight which is great… must be all that yummy chocolate he has been eating.

Ryan is in the ‘grumpy teens’ now, we get lots of grunts when talking to him. Think he is finding life in general a bit hard especially when his CF restricts him or I (mum) am over protective of him.

Thank you for the crocodile shortbread cooking kit… Ryan loved making it and also eating it.

Update 4th May 2007

Ryan had been doping really well up until this week. He has had to have few days off school as he was really unwell. We are going up the hospital this afternoon for a check up so fingers crossed all is ok.
Thank you Julie for your continued support. He really looks forward to receiving your cards, letters and gifts. All are in a special folder which he looks through very often.

Update 6th March 2007

Ryan has had a rough few weeks again and had last week of school. He slept for most of the week just waking for his pyhsio and medication. Poor boy was washed out. His chest was clear on examination by his consultant, but a cough swab was taken just in case.

Ryan has mild liver disease due to all the medication he is taking.

Update 5th February 2007

After a week of being poorly Ryan is now having a 2 week course of strong IVS. He didn’t really pick up from having his last course of IVS so his consultant decided to bring forward his regular IVS. Tomorrow is Ryan’s annual CF Audit so lots of tests – fingers crossed for him.

We have just had his Statement Review at his school, his teachers are so pleased with how well he copes with the demands of High School and his condition… he is a real inspiration!

Update 2nd January 2007

Ryan had flu just before Christmas which was a worry but he managed to avoid IVS. He was well enough to have 4 friends stay over for his 13th Birthday and had a great time. Christmas was quiet as my hubby and I both ended up with Flu so we were confined to the bedroom while the in-laws looked after the children… not a good way to spend Christmas.

Last term Ryan only managed about 2 weeks at school as he was too poorly with Pseudomonas which he still has but is not bothering him at the moment. Hoping this term is a healthier one for him.
Thank you to Julie for being Ryan’s Elf and for sending the great gifts. Also thanks to Kay Ashton for her gifts to the boys.

Update 1st December 2006

Ryan returned to school on Monday after 3 weeks of IVS and Steroids. He is now doing a four day week at school having Fridays off to rest… hopefully this will help with his fatigue and enable him to fight off chest infections. It’s been a hard few months as Ryan’s eldest brother and little sister have also been ill with their asthma and as a family we are really looking forward to Christmas and some family time – with hopefully no IVS for Ryan over Christmas… so fingers crossed.

Sorry we haven’t replied to anyone personally for sending post to Ryan and his 3 siblings, I always plan to but never seem to get the time. But please except our heartfelt thanks you really do bring a smile to their faces.

Update 1st November 2006

Ryan is on another course of IVS and is off school again struggling with Pseudomonas. He has the most awful cough I’ve ever heard so it’s taken quite a hold of him now. The IVS will continue until he feels better. When Ryan goes back to school (probably in 2 weeks) he will be doing a 4 day week to help him get through the winter months.

Thank you for all the post and especially the watch, he loved it.

Update 16th October 2006

Spoke to soon I think! Ryan is off school today with headache, high temperature and chest pains… sputum test showed he still has Pseudomonas. He has started a course of oral antibiotics but it’s looking very likely he will need IVS again. This time I will keep him off school as he needs the rest. At the moment he is in bed and is very tired. Any messages, notes, cards etc would be nice to cheer him up.

Update 7th October 2006

Following Ryan’s last course of IVS he has had a great month. His chest remains clear and he has managed to put on a little weight. He saw his consultant at CF Clinic yesterday and he was very pleased with him.

Ryan started High School this month and he loves it. The school is very supportive and the transition has gone smoothly, Ryan has settled in well. It does help having Jason & Shaun there too.

Many thanks to Julie and her son for the letters, cards and presents – Ryan loves receiving them. Shaun loves the cards that Hwee Hoon sends him so thank you, they make a lovely colorful display on his bedroom wall.

Update 31st August 2006

Ryan is still struggling to shift Pseudomonas from his lungs. He is on another course of Intravenous antibiotics, not a very good end to his school holidays and next week he will have to start his new school with his Portacath accessed too. Ryan starts High School next Tuesday which he has been worried about, his two big brothers will be there as are 3 of his cousins so I’m sure he will be ok, I may not be on the day though, his little sister also starts school that day!!

Ryan continues to take everything in his stride though and we are really proud of him. He is a real inspiration.

Thank you to Julie and her son who continue to send letters and gifts. Ryan really loves receiving them.

Thank you Hwee Hoon for sending such lovely postcards to Shaun, they are all on display in his bedroom, he is really pleased with them.

Update 30th June 2006

Ryan has yet another chest infection. Today he started another 2 week course of Intravenous antibiotics – only 2 weeks after finishing his last course!!! So he is not too happy at the moment and needs lots of TLC this next month.

Update 31st May 2006

Ryan has been unwell again and is currently on another course of IVS for two strains of the dreaded Pseudomonas infection in his lungs. It’s half term and he is not too happy, the IVS take just under 2 hours in the morning and just over 30 minutes in the evening.

Lots of post would be nice to bring him back up again.

Update 30th March 2006

Ryan has finished his IVS and two recent cough swabs have been clear, so Ryan is very well for the time being. The Dnase is working as his lung function has improved. Also we had an agonizing wait for results from a Liver Scan this last week, got the results yesterday that his liver is normal. That was a huge relief for Ryan and us. Ryan is looking forward to the Easter holidays and no doubt lots of yummy Easter Eggs!!

Thank you to everyone who has written to Ryan it means a lot to see his smiley face. A special thank you to Julie for sending some lovely gifts and post to Ryan.

Update 2nd March 2006

Ryan is continuing his IVs. Three weeks this time, as the first IVs he was having were not resistant to the bug he had grown. He has been rather down lately and worrying about things a lot so he really needs some smiles this month.

Update 20th February 2006

Ryan has another chest infection and started a 14 day course of home IVS today. He is not too happy about this as it’s the school hols… so any extra smiles he receives this month will help!

Update 3rd February 2006

We have been overwhelmed by the cards Ryan received from CMPC Forum Rakers, all with lovely messages that really made Ryan smile this month. Thank you CMPC Forum Rakers.

Ryan is doing really well. We managed to avoid this months Intravenous Antibiotics. He has started on a nebulised drug called DNASE on a three month trial. Everything’s crossed that it improves his lungs! We just need to get a bit more weight on him now.

Update 9th January 2006

Thank you to everyone who sent birthday cards, Christmas cards and presents to Ryan. It’s so nice that so many people care. Special thanks also to Karen who was Ryan’s elf. He really loved all his presents, the beanie hat is permanently on his head! Thanks also to the children from Grafton Junior School as 29 handmade cards were sent by the children and all had lovely messages for Ryan.

Ryan’s auntie nominated him for a wish from the Starlight Foundation. He wished for a computer package. On the 17th December he went to PC World to receive not only a great computer/media center but also a chair and desk. Ryan is one happy young man and we are very thankful for his wish being granted.

Update 29th October 2005

Thank you so much for everyone’s good wishes, cards and presents while Ryan was in hospital. It really meant a lot.

Update 19th October 2005

Just to let you know Ryan came out of hospital yesterday (18th). He has some weight to regain but appears a lot better.

Update 4th October 2005

Ryan has been admitted to hospital today as he still has a chest infection. He needs lots of intravenous antibiotics that I can’t manage at home. He will be in for 2 weeks at least.

Story written 2007

Jordan was diagnosed at 2 years old with an immune deficiency. This was after being ill from 3 months old with recurrent chest, ear and throat infections. He was admitted to Pendlbury Children’s Hospital frequently under the care of a Haematologist but referred to an Immunologist from Newcastle Upon Tyne. It was he who diagnosed Jordan and decided to put him on prophylaxis antibiotics.

After 6 months, Jordan was still getting infections and lots of abscesses, so it was decided to put him on IVIGs 3 weekly. This seemed to help Jordan, but he developed severe psychological problems and is very needle phobic. Jordan stayed on the IVIGs until he was 7 and was then taken off them, as it is normal procedure at around 7 years old to see if the child still needs Immunoglobulin therapy. For 6 months Jordan was great and showed no signs of being unwell, then overnight things changed and Jordan was seriously ill with Streptococcal A infection. He had to have his tonsils out to eliminate the bug. After thisJordan went downhill rapidly picking up every bug that was going.

At Christmas 2005, he had Epstein Barr at a chronic level and this was when the doctors decided he needed to go back on treatment. It took 6 months of waiting and being covered with antibiotics to get the treatment he needed. Currently Jordan receives infusions subcutaneously twice weekly, which he really doesn’t like as he is needle phobic. This treatment is required to keep his immunity up though, as without it any illness could be fatal.

Update 21st September 2012

Jordan is now moving on from Post Pals and we want to say thanks for everything over the last few years, it has been a tremendous help and Jordan has really benefited from being part of Post Pals. I hope Post Pals goes from strength to strength, it’s the little things that keep the kids going, thanks again so much.

Update 11th August 2011

Jordan hasn’t been very well over the last few months. He is having a trial off treatments and is dependant on prophylaxis antibiotics. Although he is covered by these, he is having quite a few breakthrough infections. Most are chest infections and the latest one required hospital treatment which Jordan was less than impressed with. He has been given an earlier appointment with the consultant and we hope to have some news in the near future.

Jordan is very quiet at the moment and is spending most of his time in his bedroom so any post he gets is really appreciated and cheers him up. I would like to thank all the people who send post to Jordan, as however small, it really does brighten his day. People do not realize the impact a sick child can have on family life and things can change so quickly from day to day without any warning. Thank you to anyone who has sent post to Jordan, it really does make a difference.

Update 12th April 2011

Jordan has had quite a few infections and viruses over the last two months, mainly chest and throat infections, each requiring visits to the local out of hours GP and receiving antibiotics to treat him.

Jordan is quite withdrawn at the moment as he doesn’t like people fussing over him. We are hoping to get an appointment with the consultant quite soon.

We would like to say a big thank you to everyone who has sent post to Jordan and Chloe, especially Helen Breirley. We had to go and collect the parcel from the sorting office as it had been returned once and was just about to be returned again. Also, thank you to a very kind man (sorry I have misplaced the letter attached to it) for the remote control helicopter. Jordan also received a beautiful book on birds of prey which he has been really interested in. Thank you all the Sunday School children who have sent lovely letters and pictures too, Jordan now has a drawer full of cards and pictures.

Thanks to everyone at Post Pals for doing such a wonderful job, it really is appreciated.

Update 31st January 2011

Jordan received some lovely post over Christmas and in January, some of which was delayed due to the bad weather. He received some great gadgets and models to do from the science museum, unfortunately there was no name on the parcel, so whoever you are, thank you. As always, a big thank you to Despina, Helen and Kate. Also, a big thank you to everyone that sent cards and post over the Christmas period.

Jordan has been quite unsettled for the past few months, contracting lots of viruses. He also had a really bad chest infection and needed treatment for two weeks. Since then he has had a bad ear infection also requiring antibiotics. This is what we expect as he has been taken off sub cut infusions and put on high dose prophalaxis antibiotics as a trial. We see the consultant in March and are hoping they might put him back on infusions although Jordan isn’t really in favour of this.

Once again, a big thank you to everyone who has sent post to Jordan, its really appreciated.

Update 30th August 2010

Jordan has had quite a good month with just a slight virus. He is currently on a new medication which is for a trial period. We are due to see the consultant again next month but have been pre warned that his immune system could become resistant to the new medication.

Jordan is looking forward to going back to school and Chloe is hoping to start at college, but with her current mental health state this is looking more like she may have to postpone this.

Thank you to everyone who has sent post, Jordan received an optical illusion 3d jigsaw puzzle which was great but he has mislaid the packaging it came in and this had the kind persons details on, so whoever you are, thank you very much. Also, thank you Ria for Jordan’s pillowcase, it is totally amazing. I will upload the photo as soon as I take one – Jordan is not being very cooperative right now! Thank you again to everyone who sends post, it really is appreciated.

Update 17th June 2010

Sorry for the delay in updating, we have been really busy as my Nana (who is very old) has been really poorly.

Jordan has had another 2 chest infections over the past 2 months (meaning 4 already this year) and a throat infection. He had some blood work done in May, which told us that most of his IG levels were fine but IG2 is very low. This is the specific antibody that fights chest, throat, ear infections and some other more serious infections. Due to this, it has been decided that Jordan will now have a high dose of prophalytic antibiotics 3 times a week, and he will be monitored to see if this can improve his condition.

Jordan is enjoying the football and following the world cup hoping England do well.

We would like to thank everybody who has sent post to both Jordan and Chloe. Especially Helen, Kate Dee, Claire who sends a card every month. We would also like to thank the school teacher Helen who sent Jordan a beautiful book about the universe; he was really pleased with this and is getting a good collection of books about the planets and universe. Also, Chloe received some bath accessories from Lush which smelt lovely. It really is appreciated, thank you.

Update 2nd February 2010

Sorry it has taken us so long to reply, we had a problem with our emails.

Jordan had a lovely Christmas and New Year. We had relatives from Canada to stay so it made it extra special.

Both Jordan and Chloe received an awful lot of mail over Christmas and this we are very grateful for.

Jordan has had another chest infection and is suffering from migraines, but on the whole he is doing quite well.

Chloe has had a few assessments done and it has been noticed she has moderate learning difficulties and quite severe mental health problems. She started a special school in January and she seems to have settled well, but it’s her final year and we feel she has been let down with her education and the way she’s been treated.

We would like to thank everyone who has sent post to both Chloe and Jordan, especially Helen Brierley, the Hamberg family, Martin Jackie and Jamie, Benjamin Taylor, Kate Dee, Sarah G, Debbie, Wendy, Jane, Elf Lynn and the other Christmas elf who didn’t leave their name. Thank you everyone, it is really appreciated.

Here’s hoping to a happy and healthy 2010.

Update 30th November 2009

Jordan has had his treatment reduced to monthly and this is proving quite difficult at the moment. He has had the flu virus which required tami-flu antivirals, and subsequently has had a re-occurring chest and throat infection. After a trip last week to the local children’s A&E department, Jordan is now on yet another course of antibiotics. We are hoping this will knock the infection back, but up to now there are no signs of this irritating cough relenting. Jordan is quite cheerful in himself and is enjoying the time spent in bed on his x-box. We are hoping to get some up to date blood tests very soon, and this will shed some light as to whether or not to increase his medication.

Jordan is looking forward to Christmas and we would like to thank everyone who has sent post to both Jordan and Chloe throughout the year. Especially Maria, Kate Dee, Julia Barret and all the other regulars. Also, a big thank you to everyone who has sent Jordan postcards from all over the world as he now has a lovely collection. A special thanks to Viks and Post Pals, without you none of this would put a smile on a poorly child’s face. Thank you. Wishing everyone a very Merry Christmas and a Happy New Year.

Update 1st October 2009

Jordan received birthday cards from Post Pals and he really appreciated the home made ones. We would like to thank everyone who sent Jordan post for his birthday. We would like to thank everyone who sends post to both Jordan and Chloe, it is really appreciated. Thank you.

Jordan had had his treatment reduced, but unfortunately is now starting to pick up more frequent infections. He has had 3 chest infections in the last month. It is likely he will have his treatment upped again.

He has also been seen by the orthopaedic specialist about the pain and swelling in his knees. He is now restricted again in the activities he is able to do.

Update 10th August 2009

Jordan has been quite well over the last few months with minimal infections, so the immunologist has decided to reduce his infusions even more. Good news for Jordan, but we now have to be extra vigilant. Jordan already has a nasty infection in his elbow after falling on it and it now has a rather large lump on the inside of his arm, so a trip to the GP is needed.

Jordan also has a referral to the orthopedic specialist later this month as he is having major problems with his knees. The advice given for now is plenty of rest and no sports or physical activities which is proving rather difficult with it being the school holidays.

Anyway, a big thank you to everyone who has sent post to both Jordan and Chloe. Jordan has received a lot of post from Salt Lake City and thank you to the lady who sent him the wooden puzzle of a dinosaur (it is now securely glued together and is taking pride of place on our fireplace). Thanks also to Viks for the moonpig card as Jordan is thrilled with this one.

Once again, thank you to everyone who sends post to both children. It is most appreciated, especially when this restless boy wants to be out and about, but cannot exert himself as much as his friends.

Update 4th May 2009

Jordan has been a little unwell over the past weeks. Firstly we had a chicken pox scare which meant a visit to the local children’s A&E department. We were seen by two doctors here and the first said it was unlikely to be the chicken pox, but the second said it was as it presents differently in children with immune deficiency. Jordan was just given an extra dose of immunoglobulins and some antivirals.

We then had to go back again with a different problem as Jordan has been having trouble with pains in his knee (he had developed a swelling under his right knee and we thought it best to go and get it checked). It turns out Jordan has had a grow spurt and the tendon on his thigh which attaches to the shin bone has flicked off, causing it to shear the shin bone. He is now under orders to keep off the knee for approximately 6 weeks to see if it settles down, but if not, they will decide what the next plan is going to be.

I would like to thank everybody for the cards and gifts that both Jordan and Chloe have received over Easter and the last month. Jordan has spent many hours with his wordsearch mug. Thank you to Helen for the handmade cards and chocolate lollies. Jordan also had a gift from Hong Kong – it was two egg shaped ceramic faces with herbs inside. These were really different and now take pride of place on Jordan’s bedside drawers. Also, thank you to everyone on the Post Pals team. Without you guys, none of the children would have anything to look forward to. Something so small with a hand written message means so much to a child who is not very well. Thank you all.

Update 10th March 2009

Jordan hasn’t been too well this month; he’s had a lingering cough and cold which we just can’t seem to get rid of. He also now has a thickening of the bone just under his right knee and this is causing lots of problems and quite a bit of pain. He is also having pain in his left heel.

Jordan is trying to cope and keep up with his friends at school but after his first P.E. lesson on a Monday, he is then unable to join in any physical activities for the rest of the week. We are just hoping this is going to ease up otherwise it will be another doctor added to our long list.

We would like to thank everyone who has sent post to both Jordan and Chloe. Jordan has received some lovely home made cards, one which had Bart Simpson on (one of his favourite characters), thank you Adam. Also thanks to Wendy who sent both Jordan and Chloe personal hand made cards. Jordan received a great football bath bomb which he couldn’t wait to put in his bath and Chloe got a chocolate candle which really did smell like chocolate. Also, a big thanks to everyone at Post Pals as you all do a brilliant job. The small personal cards and messages people send really do make a big difference when a child is feeling low. Thank you.

Update 2nd February 2009

Both Jordan and Chloe have been unwell over Christmas and throughout January with a reoccurring flu virus. Jordan is also having lots of pain in his joints and his heels; he is seeing a paediatrician on Thursday.

We have a lot of people to thank for the post received over Christmas. Both children received boxes from elves and there was also a stack of cards and more gifts. Thank you to Dani for Chloe’s box and also to Maria and Michael for her other box. Jordan’s came from elf Cole and we would like to thank you as well. A big thank you to Julia Barret and also Helen who sentJordan a great wooden puzzle which he spends a lot of time with, especially when he is having his treatment. Thanks also to Despina, Sam Alan, Noah and Imogen, Sarah, Karen, Dave, David, Vicky, Christopher, Ria, and Bobby the dog. An extra special thank you to Post Pals, without you none of this would be possible.

I would like to say a big thank you to everyone who has sent post all year as it means so much to see a smile on their faces when they receive post. Thank you all.

Update 29th November 2008

Jordan was seen on Monday by the immunologist; he is quite pleased with him at the moment and is not going to change any of his infusions or medications. He will be seen again in April but if he is poorly before that we will be seen sooner.

Jordan is having intermittent pain in his knees and ankles but because there is no swelling at the moment it is best to treat it with brufen as and when he requires it. If we notice any swelling then we have to go straight down to the hospital or contact someone there as children with immunology problems can also suffer with arthritis.

Thank you to everyone who has sent post to both Jordan and Chloe over the past year, especially Jenn, Helen, Dorothy, Julie Barrett, and St Mathews Sunday School. Thanks also to Viks and Post Pals itself.

I hope you all have a great Christmas and a happy and healthy new year.

Update 3rd November 2008

Jordan has been quite well lately. He has settled well into high school and seems to be doing well there.

Although he has been quite well infection wise, he is still having problems with his bowels and has had his medication upped again. He is now taking an extra 3 tablets at night which he isn’t very happy about.

He is due for a review with the paediatrician very soon and also with the immunologist at the end of November.

We would like to thank everyone who continues to send post to both Jordan and Chloe, especially St Mathews Sunday School. Thanks also to Post Pals for the parcel for each of them, Jordan was particularly happy with a signed superbike poster and Chloe was really pleased with her DVD and jewellery. Thanks again to everyone.

Update 23rd September 2008

Jordan spent the last week of the summer holidays camping. He really enjoyed the experience although he did suffer a bit as he had a few days vomiting with a bug and he also had an infection in his arm after a scrape with a spike which required antibiotics. Jordan really enjoyed the kayaking and cooking on an open fire. It was a real old fashioned children’s camp and the experience was great for him.

He has just started at secondary school which seemed rather daunting but he seems to have settled really well and we hope he continues to be happy here.

Finally, thank you to everyone who has sent him cards, letters and gifts, however small. They mean a great deal to Jordan, Thank you everyone who sent him birthday cards, it was really nice. Special thanks to St Mathews Sunday School who all signed a card and he thought that was great. Thanks as always to Jenn, Helen, Dorothy and anyone else who has sent something to Jordan or his sister Chloe as it is really appreciated.

Update 31st July 2008

It has been quite a busy time for us. Jordan has now left his primary school and is preparing to go the high school. We have had many meetings with Senco and a care plan has been put into place so that if Jordan becomes unwell he will receive the best possible care.

Over the last month Jordan has been away with school, he went to Lleder Hall which is inNorth Wales, somewhere near Snowdonia. Jordan enjoyed the experience but became unwell on the second day and spent some time in bed with a nasty sickness bug. He has also had a couple of skin infections and has an irritating reoccurring cough.

Jordan took part in a cricket tournament with school at the local cricket club and also took part in the end of year leavers show, which was a great achievement for him.

We would like to thank everyone who has sent post to either Jordan or his sister Chloe. Especially to Dorothy, who has sent some lovely cards and notelets and some make up for Chloe which she was really pleased with. Thank you also to Jenn who never fails to sendJordan the lovely home made cards complete with Jokes inside. Thanks to Maria Richmond for her magical e-cards and thank you to anyone else who has sent post as it really is appreciated.

Update 2nd June 2008

Jordan has not been very well over the past few weeks. He has had lymphadenitis which resulted in us having to visit Pendlbury Childrens Hospital. He was given a course of antibiotics and he got over it, but it did take a little longer than normal. At the momentJordan is suffering from a chest infection. He is also refusing his treatment and this is probably why he is getting lots of infections. The consultant has decided we can have a trial infusing once a week to see if this helps Jordan.

Many thanks to Jenn who has sent post to Jordan regularly and also to Julie Barrett. Thanks to everyone who has sent post to Jordan and to Chloe as it is really appreciated.

Update 1st April 2008

Jordan hasn’t been too bad this month, although he did suffer a nasty throat infection over Easter and he had infected glands under his arms resulting in really sore arms. He still has a cough and cold which he can’t seem to fight off; we are just about managing to keep it at arms length. He is also suffering from frequent bouts of painful mouth ulcers at the moment.

Jordan is quite down at the moment as the school residential is coming up and it doesn’t look as if he can go because there is no-one who is able to do his treatment. We are trying to figure a way around this so he doesn’t miss out.

We would like to send a big thank you to Jade for sending Jordan a 20 questions funball – we have all had hours of fun with it! It really is amazing and thank you Jade for Chloe’s nail set too. We would also like to thank Sally for her funny vicious veg note pad and pen  and also her postcard. Jordan loves receiving postcards so thank you also to Kate D for her postcard to add to the growing collection. A big thank you to Claire, Marie and Michael and Erin’s Nan and Grandad for Easter cards. Also thanks to Maria for sending the magical e-cards Jordan always has a giggle at these. I hope i haven’t forgotten to thank anyone, it really is appreciated. And thank you to the anonymous person who sent the tangle, this is a great little gadget used for stress and other problems and it really does work as i (Jordan’s mum) have tried it myself. Thanks to everyone at Post Pals who keeps this great cause going – the little gifts and notes which are sent really mean a lot to both Jordan and me.

Update 9th March 2008

Jordan saw the specialist from Newcastle who told us that the large swellings he is having are reactions to the subcutaneous infusions. Unfortunately there isn’t a lot to do apart from try a different manufacturer. We have just received our first delivery of the new medication andJordan had his first infusion which didn’t go very well as he had severe itching and still got the swelling. Jordan isn’t very happy at the moment; he doesn’t want to be different from his friends anymore and so is saying he doesn’t want any treatment or any more medication. Unfortunately, without these, Jordan would become seriously ill and we cannot seem to be able to make him understand or accept that he has got to have these treatments for his own sake. We are having home visits from specialist nurses and play specialists to see if they can help, as we are running out of ideas.

We would like to say a big thank you to Julie Barret who never fails to send something to cheer Jordan up. Also to Jenn for the football card, Denise, Karen, Helen and Kate Dee for their postcards to add to Jordan’s ever growing collection. Also to Sally for the football magazine and the top of the pops magazine for Jordan’s sister Chloe. Thanks to St Mathews Sunday School for their list of pen pals for Jordan to write to, we will do so as soon as we get a little bit more time. Also a big thank you to Maria for the magical ecards, Jordan always manages a giggle at these. I hope i haven’t forgotten to mention anyone, if i have I’m really sorry! Thanks to everyone at post pals – the job you guys do is amazing and really does lift our kids when their spirits are low.

Update 30th January 2008

Jordan hasn’t been very well lately. He has got a glandular fever type infection, which he seems to be taking a while to recover from. He seems to have one good day and then two bad days. We are going to be seen by Professor Cant from Newcastle next month for a full review, which will hopefully help us move forward a bit. Jordan is also having some chest pains due to inflammation of the chest muscles. He is taking regular pain killers for this.

We would like to thank anyone who has sent Jordan post as he really appreciates it.

Update 20th January 2008

Last week we got the results of some of Jordan’s blood tests, unfortunately he has the ebv/glandular fever infection again. This is the second time in 18 months he has had it. He has been off school now for a week and it could be up to 6 weeks before he starts to feel any better, he has good days and bad days. The main symptoms of this are fever, severe headaches, nausea, sickness and extreme lethargy. Jordan must get plenty of rest to start to feel any better, but as soon as he is feeling a bit better he tries to conquer the world. He has been quite breathless recently and we are now waiting for some heart tests to be performed to rule out anything that could be sinister. Throughout all this he never complains and always has a smile.

I would like to thank a young girl called Lauren who has recently started writing to Jordan; he is really impressed by this. We would like to thank everyone who continues to send post toJordan, it really is appreciated.

Update 3rd January 2008

Jordan has been quite well over the Christmas period, although he has been suffering with reoccurring pain in his knees and legs. He has also suffered with a sickness bug but this isn’t unusual for Jordan. We are due to see the consultant on monday and he should have the results of Jordan’s recent blood tests which should throw some light on his lethargy and nausea.

We would like to thank Despina for her lovely Christmas card from the USA and also Ellyn in the USA. Special thanks to Julie Barret and her family who sent both Jordan and Chloe cards. Thanks also to everyone who sent Jordan gifts, he was really excited about these and we really appreciate it. Thanks to everyone who takes the time to read about Jordan and send him something, it really is appreciated. Jordan now has a large collection of post cards from all over the world which he really treasures; it’s the small things like these that make a big difference.

Update 2nd December 2007

Jordan is now on new medication for his bowels, he has suffered quite badly over the last few weeks with severe tummy ache and constipation. He has also had a sickness bug twice but this isn’t unusual for Jordan as he always suffers like this in the winter.

Jordan would like to thank everyone who has sent post, especially Julie Barret, Barbara (head of P.E. at an army high school in Germany) and also Katie Dee. Jordan received his quilt of love from solak and he was absolutely over the moon – it is beautiful and really appreciated.

Jordan would just like to wish everyone at Post Pals a very merry Christmas and a happy new year. We hope you all stay well.

Update 28th October 2007

Jordan is now on some new medication for his bowels; we still have to see if it will work as he has only been on it a couple of days. The paediatrician seems to think Jordan has a slow moving bowel and this is what is causing the problem. At last we finally seem to be moving forward and getting a bit of help and support with this problem. Jordan has a new pump to administer his infusions now, so this will mean he can have two infusions going at once. I really don’t know how this will be as at the minute he is having gross swellings from one infusion, so the thought of two doesn’t really seem appealing right now, but we are willing to give it a go. Jordan has been quite well the last month with only one infection and that was in his infusion site and i must say he was quite poorly and in a lot of pain, but after a course of antibiotics he was soon back to his normal self. He also suffered with a sickness bug and acute abdominal pain, but seemed to bounce back after that too. As winter and the bad weather is on us this is when we have got to really watch Jordan, with all the winter bugs flying around he will be quite vulnerable.

I would like to thank everyone who has sent Jordan mail. Just a small note from someone he doesn’t know shows that people really do care. A big thank you to Julie Barrett, Jordan was absolutely thrilled with the tiny kite he received – he tried flying it in the garden but there wasn’t enough wind and we have now convinced him it should sit on his shelf so his friends can see it. Thanks to everyone, it really does brighten up his days.

Update 24th September 2007

Jordan is having a really tough time at the moment and he has been referred to a paediatric consultant because he is having major problems with his bowels. It is thought that the Diana nurses will come in to our home to try and ease the pain Jordan is having and to try to get his bowels moving regularly. At the minute he is only going about once a week and is totally reliant on laxatives and painkillers. Jordan still has a smile on his face and doesn’t like to complain.

Jordan would like to thank everyone who sent him birthday cards as it was really appreciated. A big thank you also to the people who are sending Jordan postcards form all over the world, he really enjoys receiving them.

Update 7th August 2007

Jordan was admitted to Pendlbury Children’s Hospital for some dental work in the middle of July; however his level of anxiety and his fear of hospitals caused this to be postponed. He was actually taken into theatre but because he was vomiting so badly the anaesthetist thought it would be too dangerous to put him to sleep. He his now seeing the psychologist regularly to try to help get his anxiety under control so he can be re-listed for the dental treatment he needs. Jordan cannot attend a regular dentist because of his condition. Jordan is suffering with abscess in his mouth at the moment and frequent bouts of ulcers.

Jordan would like to thank everyone who sent him post; he is now getting quite a collection of postcards from all over the world. We are really grateful for these as they brighten upJordan’s days.

Update 7th July 2007

We have just got back from Spain. We enjoyed a family holiday there, away from all the stress of the hospital, although we still had to take his treatment and do it while we were there. Jordan is due to go in hospital on the 12th of July for some dental work as he has a tooth which has grown through the bottom of his mouth under his tongue. It isn’t even in the gum so this has to be removed along with some other work. Jordan is seeing the psychologist on a regular basis at the moment as he is experiencing a lot of psychological effects linked to his condition. He has had a couple of skin infections both caused by either a scratch or a splinter, but generally he has been quite well. He isn’t very pleased about going in to hospital but the psychologist is trying to help with that.

We would like to thank everyone who has sent post to Jordan, especially Julie Barret. He really likes the postcards he receives and now has a special place where he keeps them all.

Update 9th May 2007

Jordan had his appointment brought forward as he was suffering from lots of itchy hives which were making him really miserable. The immunologist has said it is utucaria and can affect some people with immune problems. He has now been put on some new medication which he has to take daily.

Jordan would like to thank Julie Barret and her Allan for the gift and cards he received. Thanks also to Nicole D for her lovely letter and he has received some great postcards from Australia and Finland. A big thank you to everyone who sent post to Jordan, we really appreciate it and it brightens his day.

Update 7th April 2007

Jordan had a few infections and viruses throughout February and March. It started with him catching gastric flu and this left him feeling rather low and fed up. He was just getting over this when he got a chest infection and had to be on antibiotics for 10 days. He seemed to pick up nicely after this, but was knocked back again by an infection in his stomach from his infusion site. This left him feeling very sore, but if you asked him, Jordan would always say he’s ok as he doesn’t like to complain. He finally got over this last infection and apart from an attack of rather large itchy hives he seems to be ok for now. At the moment Jordan is looking forward to Easter and enjoying the sunshine while it lasts.