Wesley N

22 May 2014

Story written 2014

Wesley was diagnosed with Charcot-Marie-Tooth, a hereditary motor and sensory neuropathy, at the age of 12. Looking back, he had always shown symptoms – high arches, feet turning inwards etc. He was a ‘clumsy’ child and found it difficult to run and do the things that other children seemed to do so easily. Doctors and physiotherapists put it down to over flexible joints and said he’d grow out of it. Wesley took everything in his stride – despite being teased throughout his school life, he always tried his best in everything he did and enjoyed life to the full. In his fifth year at primary, he suffered a soft tissue injury to his lower back. He was hospitalised for a time and when he returned to school he was using a walking frame to get around. Although he was eventually able to walk unaided, the pain never really went away. Nobody knew why, but still he carried on! The school awarded him a prize for ‘Endeavour under difficult circumstances’ and he went on to achieve high grades in primary education. In his final year at primary, he was selected to take part in an exchange trip to Germany with ten other students. Although he didn’t find it easy, he enjoyed experiences such as ice skating, sledge dog racing and spent time in a German school. He was awarded a certificate for the ‘best joker and the person with the most falls!’. He was an inspiration to everyone and it was the best experience of his life.

We had noticed that his feet were turning in more and he was tripping more often, but as always he took it in his stride. It was part of him. Like all kids, the transition to secondary school was a daunting but exciting time for Wesley. He settled in well in his first two weeks but the extra strain of the walk to school and the huge building started taking its toll. He began to fall daily, his legs just ‘giving way’ until it got to the stage where he couldn’t walk more than a few steps without problems. He went to the GP, had several trips to A&E and was then admitted to hospital five times in two months. Each time he had fallen there was no injury but the pain didn’t go away. Around this time, we became aware of Charcot-Marie-Tooth. It ran in our family, but no-one had thought to mention it until now. When I approached the GP he said that it was unlikely, but a blood test confirmed CMT type 1. He was sent for physio, was given a wheelchair for use in school for his own safety, and fitted with AFOs which helped him to walk with crutches. Over the next year Wesley continued the best he could. Every fall meant x-rays which showed no injury, yet the pain told a different story. It began to affect both his legs, his lower back and then his hand. He would have times when the feeling in his legs would just go altogether and he couldn’t move them at all. It didn’t sound like the normal effect of CMT but then everyone is different. What else could it be?

Earlier this year, Wesley was doing quite well until he took a slight knock to his upper back. The pain was excruciating but again, x-rays showed nothing. After two weeks in hospital, with no real improvement he was sent home, confined to his bed and with me becoming a full time carer. Wesley was due to be seen by a visiting neurologist in his twice yearly CMT clinic. We prayed that he would be able to shed some light on what was going on. When the day came, he was desperate for answers, but eight paramedics couldn’t get him out of the house. His whole body was suffering from severe muscle spams and causing him the worst pain he had ever experienced. The slightest touch had him in tears. In the end I had to go to the appointment on my own, desperate for someone to help him. Within five minutes the neurologist gave a diagnosis – as well as CMT he was showing classic symptoms of complex regional pain syndrome type 1. It is a very difficult illness to treat – normal pain meds don’t touch it and the effects can be life changing. Wesley’s nerves were in overdrive, sending extreme pain signal to the brain, even though there was no injury. There is no cure. A CRPS sufferer can only learn to life through the pain and hope that intense treatment will lead to remission. Wesley has currently been in hospital in Cornwall for over sic weeks. The CRPS has spread to both legs, both arms and his back. The medical staff here don’t know much about the condition. They can only help on a daily basis, keeping him safe and doing their best to make him as comfortable as possible. We have been given a date (30th of June) for an assessment at a specialist hospital in Bath. Hopefully he will be able to take part in one of their intensive rehab programs which will teach him to move his limbs again and be able to get back to some kind of normality. The key is to stay positive and to believe that he can do it!

Wesley is a strong boy. Whatever difficulty or pain he faces, he always manages to pick himself up emotionally and keep going. As there is nothing else that can be done until his referral to Bath, his consultant is hoping that with physio and psychological input he will be able to come home for a while and be with his family. In the meantime, we will continue to try and keep his spirits up and keep him smiling. Ultimately he is going to have to start moving his limbs with help, as although he believes that the pain is unbearable (The MacGill Pain index show CRPS pain being the worst – above child birth and many other painful conditions), it is his only hope.

Update 29th January 2016

Thank you to EVERYONE who has sent cards and gifts. Especially those who took the time to make hand made cards over Christmas – they were all amazing. We haven’t been able to thank everyone individually as yet, but want you to know that each and every one brings a smile and is much appreciated.

Thank you also to The Extra Smiles Team and Cornwall-based quilting group who delivered the most amazing quilt in time for Christmas! The amount of work that went into it and the thought, involving Wesley’s favourite colours and themes was unbelievable and it’s now one of his most prized possessions!

Wesley is doing well and his CRPS is currently under control. He took delivery of his first powerchair today, which will help to give him some independence and enable him to return to school. CMT wise, he seems to be losing some strength and being unable to walk is taking some getting used to. As always though he is positive and determined to make the best of things.

Wesley’s sister Lowenna has been having a hard time as she is starting to suffer some symptoms of CMT and is experiencing a lot of pain and some difficulty walking. She is currently under physio and has an appointment to discuss aids which will hopefully help her. It’s a worrying time for her and for Wes, who loves her to bits!

Update 7th November 2015

Sorry for not updating for a while. Wesley and his siblings get so much joy from Post Pals and we would all like to thank you so much for your continued support.

Back in May, Wesley was suffering from dislocations in his knees due to hypermobility and was having physio etc to try and prevent further problems. We were also in the process of fundraising for a powerchair and were due to have adaptions done to the home to give him back some much needed independence.

Wesley tried very hard with his physio, but the problem continued every time he tried to move either leg. Back in July we had an appointment with a knee surgeon. Despite his best efforts, the physio didn’t seem to be having much affect and his leg braces weren’t doing much either. X-rays basically showed that his knee caps aren’t where they should be, as well as being very hypermobile. Surgery later on may have been an option, but due to the fact that he has CRPS, any surgery carries a huge risk of the condition being aggravated and there is only a slim chance surgery would help anyway. Being told that there was nothing they could do was hard (for me at least – I cried myself to sleep that night), but Wesley took it on the chin and came to the conclusion that at least he knows and being in a wheelchair ain’t that bad! We are hoping to travel to Bristol Children’s Hospital for assessment later this month. Maybe they will have some ideas?

Wesley’s CRPS remains ‘under control’ right now. Wesley says the pain is just as bad, but he is learning to live with it and he’s determined not to let it get him down. November is CRPS awareness month and he has been using his design skills and the power of the Internet to spread the word about the condition. He has regular contact with some young people in America who have CRPS and they are a great support to each other. He’s determined that one day we will visit and he will get to meet his new friends!

His CMT seems to slowly be progressing and is causing a lot of weakness in his hands. He exercises and stretches daily to try and keep his feet and ankles supple and to slow any muscle wasting that could occur.

As yet, we are still fighting a battle to have an outdoor lift installed. It was due to go in in February, then was delayed until July (just before the summer holidays). Unfortunately, this never happened so the summer holidays were problematic and meant a lot of time was spent indoors. The council did provide a stair climber, which enables me to get him out when the weather is good – but we live in Cornwall! We made the most of good weather when we could and had some fun times, but when the weather is bad (which it is now) we’re pretty much stuck! We were all very excited about the start of the new school term! Wesley took his options and is working hard towards his GCSEs. Lowenna started a new school which she loves, and Tegan couldn’t wait to get back! We had a new date for the lift installation of 7th September, which meant we would have all three children enjoying school for the first time in three years! I planned to start training again and looking at getting back to part-time work. The 7th of September came and the lift was brought down from Sheffield – only to discover that it hadn’t been measured properly and had to be taken back. At this point, there is still no news.

Wesley is amazing at staying positive. He is top of his class, studying graphic design, catering and computing, but has only spent a handful of days actually in school. He has also missed out on family days out, being able to visit his family in Swindon, but still remains positive! How he does it I’ll never know. I couldn’t be more proud of him.

So, lets look at the positives! Through support of amazing family and friends we managed to reach our fundraising target for his powerchair! We had some great fun along the way – sponsored zip wires, coasteering, crepe making and an awesome family fun day which saw over 100 people coming to our local community centre for a day of activities! Wes was able to attend this one, dressed as Venom (the theme was super heroes, of course!) There was a visit from Elsa and Anna, which Tegan loved! Local charities including CAAP (Cornwall Accessible Activities Program) had stalls which meant we were able to raise funds for others too, which was a great feeling! The community really pulled together. Towards the end of our fundraising, the NHS agreed to reassess him and finally agreed that they could also provide help, which made up the last of the money needed. Until the famous lift is installed, we are unable to order the chair, as we can’t get it in the house – but as soon as it’s done we’re away!

Wesley has also been provided amazing opportunities through another local organisation – Activ8! We first met them three years ago when Wesley and his sister did the ‘Big Santa Fun Run’ to raise money for CMT UK and they put him on a waiting list. He has started a two year course, where he and six other young people with disabilities get to go away for a weekend once a month. When he is stuck in the house so much this a massive thing for him! They have provided transport and helped him to get out of the house with carers and support workers – it has been amazing! Lowenna and Tegan also benefit from this as it means for one weekend a month they have our full attention and we have done some great things – we’ve been to a Status Quo concert, visited Banksy’s Dismaland … fun times.

Also, through Activ8 he has joined a panel of young people on the SEN board, visiting County Hall and advocating on a range of topics that he is very passionate about. Again, transport and everything is provided through the charity. The last meeting was about wheelchair services and Wesley sure made an impression! He seems to have a knack for public speaking and isn’t scared to speak his mind and be a voice for others! Hopefully, the next update will include having the new lift, ordering his wheelchair and looking forward to the new year! Until then, we will look forward to planning a family christmas. Thanks again to everyone at Post Pals and all of you who have sent cards and gifts. Love and hugs to you all x

Update 1st May 2015

Since getting Wesley’s CRPS symptoms more under control and getting him back on his feet, he is now experiencing difficult times due to hyper-mobility. Every time he tries to bear any weight on his feet, both knee caps are now popping out of place! So, six weeks in leg braces, legs fully extended and being adjusted every two weeks, and also physio, to see if he can build up enough strength to prevent it from happening. If not, we will be looking at possible surgery.

At the moment, he is unable to use his newly installed stairlift, so is confined to his bed. On a brighter note though, they have started work installing a wheelchair lift outside the house and plans are in full swing for some exciting fundraising events to help him get a powered chair!

Thank you for your continued support. Your thoughtful letters and gifts mean so much. We will get around to replying, but it may take a while. In the meantime we will keep you posted!

Update 4th April 2015

The past few months has been like a roller coaster of ups and downs! Wesley has been progressing well since coming out of hospital last year. His determination has seen him return to school part time and he continues to do amazingly in all subjects. He has been deciding on his options for his GCSE years and wants to study computing and graphic design. We are lucky that his school are so supportive and what ever he is going through they do their very best to help him achieve his goals.
Wesley’s CRPS seems to be pretty well under control – the daily pain is still very much there but he is learning to take it as it comes.

His latest set back has been since he has begun to be more active and walk around more using his AFOs. He dislocated his knee, tearing the tendons and causing some damage. It seems that he is hyper-mobile (which we have known for some time) which means this is likely to reoccur, so six weeks in a leg brace and then an appointment with a knee surgeon to see what can be done.

Wesley and his sisters received some amazing post while he was in hospital last week – it couldn’t have come at a better time. Thank you so much!

We are in the process of fundraising for Wesley to have an electric wheelchair to help him around school and to enable him to get out and about a bit more. The support we have had from family and friends has been amazing and they’re arranging some exciting events in the coming months. I’m sure we will soon have lots to write about!

Thank you to everyone who works so hard to keep Post Pals running and to everyone who sends post – it makes such a huge difference to peoples lives and we can’t thank you enough.

Update 18th October 2014

Since coming out of hospital so much has happened! Wesley is finally getting the help and support he needs with regards to adaptions to our new home, home tutors and support workers who visit to give us some time out, and Wesley some much needed 1 to 1 time.

Health wise things are still tough. He has been managing to deal with his pain more effectively and we’re sure this has a lot to do with being at home and around his family and friends. His spasms are a lot less frequent but he has been suffering from seizures, which can be triggered by the slightest knock to his legs. These can be very scary, particularly for him as he is aware but loses all control, feeling in his body, ability to talk or communicate, and then blacks out. All we can do is make sure he’s safe and leave him to come round. So far his movement has returned within an hour or so. We are pretty sure that these are non-epileptic and a reaction to sensory overload but he will be having an EEG and tests this month to confirm this.

Despite this, it is always so important to focus on the good bits and his strength and determination make us so proud! In the past two weeks he has managed some time in school which has been a huge boost and his grades are amazing (despite missing over six months of schooling).

Every post card, gift, message, helps to lift his spirits and with his condition this is SO important, so thank you again Post Pals. We can’t thank our Post Pals enough for all the lovely messages and gifts. Thank you to each and every one of you and those who do such an amazing job of running the charity and making such a difference during difficult times.

Update 13th September 2014

Just want to thank everyone who has been sending post to Wesley, Tegan and Lowenna! It really helps brighten up their day! Wes has had lots of ups and downs… he’s slowly getting some time in school and making progress, but the post plays a big part in keeping him smiling and positive!

Tegan has been making cards and things to send to people – especially her favourite Post Pal Melissa. She was very happy to have a little photo of her and some lovely things for her new wall. Tegan’s birthday is coming up too, and by the looks of it she’s going to have lots of extra cards and pressies this year!

This group is fantastic and I am really looking forward to having some time to post Tigi’s bits and send some post myself. Thank you so much everyone.

Update 1st August 2014

So much has happened since I last wrote an update. Wesley had been allowed home (staying with family as our house wasn’t suitable) and was unable to use his limbs or handle any kind of touch without his body going into spasm.

Well, I am pleased to report that we exchanged houses and we were able to move into the house Wesley had been staying in and be a family again! We are settling in well and finally have a great support team around us, enabling Wes to have more interaction and independence. He has been doing amazingly with his school work (even though he has missed a whole year) and the best bit of all is he has full use of his limbs again! Having a hospital bed in our new living room has made a massive difference and we are looking at making adaptions for the future. Thanks to new splints he is able to walk a bit around the house and was able to have his first bath in two years! The spasms have calmed right down too which is making his life a lot easier and he is coping well with his pain – he’s determined not to let anything hold him back!

We are certain that his improvement is down to being at home and having some normality back! He is more confident, positive and Wesley’s Post Pals have had a huge part to play in that!

Thank you from Wesley, Lowenna and Tegan as they are loving the support and smiles they are receiving from Post Pals. Hopefully things are on the up and we look forward to bringing more positive news very soon.

Update 1st June 2014

After 11 weeks in hospital with severe CRPS symptoms, Wesley was very happy to be allowed home! It has been a tough time for all of us – Wesley is currently unable to use his legs or his right arm and the slightest touch (even from clothing) leaves him in severe pain. When he was first admitted, he was getting all over body spasms – these are now less frequent as he is learning to control them through breathing and sheer determination, however it does occasionally lead to him being unable to use his arms at all for a time. The plan was to send him to The National Hospital in Bath for assessment and treatment, but it was decided that this would be far too traumatic as it would involve a six hour round trip! Instead, we had a two hour conference call during which we spoke about symptoms and how it was effecting not only Wes but the entire family. He is so scared – although remission can be achieved in many cases through a combination of physio, OT and psychological therapy, his nerves are in overdrive, sending constant pain signals to the brain. He knows that he will need to start moving the affected limbs ASAP. for the best result, but for Wesley this makes the pain so much worse, as does the anxiety and stress. On the other hand, not moving will also make the pain worse and lead to complications. The Bath team have set up a treatment plan and will be visiting Cornwall in the near future to work with his care team – it was decided that the best thing for him would be to send him home, to be with friends and family and to get some normality back in his life. There is not much that can be done in hospital – pain meds don’t help and he is more vulnerable to being knocked, setting off spasms and picking up bugs. Being at home should give him the motivation and strength to face the journey ahead.

For the past two years we have been fighting to get adaptions or a suitable property for Wesley without leaving our home town, our support network, school etc. The home we are currently in can’t be adapted at all due to poor access to the property and doesn’t have the room we need to care for him. So along came another plan – a mutual exchange with family members who live just 5 doors away and have supported us no end in recent months! The move is underway with just some forms to sign and waiting for an actual moving date. In the meantime it was suggested by the family that Wesley stay with them, so that he could come ‘home’ and not have to worry about being moved again when the time comes. Last Friday, a new hospital bed was delivered and support finally put in place after two long years and he came home. Apart from having to remove a window to get him into the house it was a relatively quick transfer – the paramedics were amazing and the welcome home banners, cake that his cousins had made, and a pile of post from Post Pals made him a very happy young man. We have a long way to go and it’s not going to be easy but for now we’re just happy to have him home. We are so lucky to have such supportive friends and family around us. Without them, it wouldn’t have been possible.

Thank you for all the welcome cards received during Wesley’s first month as a Post Pal! Such a lovely warm welcome which really put a smile on Wesley’s and his sisters’ faces during a really hard month! Tegan especially loved receiving a home made card from a 9 year old girl in Scotland. She was so excited! Wesley received a lovely letter from Germany from a Post Pal who shared lots in common. It brought back some lovely memories of his time spent in Germany in his last year at primary school and he couldn’t wait to write back! Wesley, Tegan and Lowenna, were surprised to receive some lovely and thoughtful gifts, which were kept as a welcome home when he came out of hospital! Tegan spent ages colouring princesses, while Lowenna turned her hand to making friendship bands and Wesley has spent hours doing puzzles and learning to draw Marvel characters – perfect for a young man who so enjoys his art and comics! We can’t thank you all enough.

Being a part of Post Pals has already been a huge boost for the whole family! A simple card can go such a long way and the kids were so overwhelmed they have started to make cards and gifts to send to other children too! Thank you so much.

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Bethany H

22 May 2014

Story written 2014

Bethany first became seriously ill at the age of 15 months when she suffered from a ruptured intestine which was unnoticed and led to peritonitis. Following surgery to rectify this at Great Ormond Street, Bethany became one of the youngest patients to have her appendix removed at only 17 months.

In the months after Bethany’s operations she continued to suffer excruciating pain and suffer from severe distension of her stomach. Initially this was an allergy to milk, but due to the way Bethany’s combination of conditions attack the body it became apparent that milk allergy was only the beginning. In January 2011 Bethany’s doctors decided to feed her via a feeding tube for six weeks in order to allow her body to rest and then try to reintroduce food on a piecemeal basis. Unfortunately, three years later, that has still not been possible due to her suffering allergic reactions to any food that enters her stomach. Bethany’s body decided it didn’t like the feeding tube or button devices inserted and in two and a half years she went through several buttons and two gastric pegs. Whilst investigating the cause of this it was discovered that Beth also has dysmotility, meaning her stomach doesn’t empty quickly enough and the easiest way for it to leave the body was through her peg site causing continuous infections. The decision was made to feed her via a jejunostomy, so now the feed bypasses her stomach directly into her bowel for 22 ½ hours a day.

After intensive testing and countless visits to specialists, Bethany was included into a research clinic at Great Ormond Street into Ehlers Danlos Type 3 and the connection with gastro disorders. As a result of the testing it was discovered that Beth actually has Type 6 Ehlers Danlos of which there has only been 60 reported cases of worldwide and of those 60 Bethany is the only one that Great Ormond Street are aware of who has the stomach problems as well.

Bethany is currently in hospital as she is now having to have TPN (fed IV).

Despite all of her health problems which leave her in pain and spending lots of time in hospital or confined to bed, Bethany will always manage a smile and a few select wise words to cheer you up when you are down. She is entirely selfless and is always looking for ways to help fundraise in order to try and make other people’s lives as comfortable and enjoyable as they can be.

Update 20th April 2020

Where do I start, this year has been horrible. In January Beth became very poorly with pancreatitis and ended up in hospital for 3 months. She had to celebrate her 16th birthday in GOSH. She has had to come home on a few IV medicines as every time we put to much in her Jej it causes horrendous pain and being sick and it also makes her pancreas levels rise . Beth should have had a procedure on her pancreas but with the covid 19 it was cancelled due to no intensive care beds and they didn’t want to risk it just in case she needed one so this has been pushed back until August depending on this covid. Beth is still bleeding so she’s still on steroids which makes it more high risk for her during this time , while us being on lockdown she’s been helping with baking and cooking, she also still does school work with her tutors through zoom. Only one she really misses is cooking as she’s not allowed to leave house or have people in but they are doing food hygiene level 3 over zoom so this should be competed in a few weeks hopefully then she will do a test.

Also during this flare Beth can not tolerate drinking water or have ice cubes it cause so much pain and sickness. This flare was the worst we have seen had to have lots of corrections but she just keeps smiling

Update 1st October 2019

 Sorry for the delay in updating, it’s been a stressful few months. In July Beth ended up in her local hospital due to her pancreas flaring. This has happened about 15 times now but this time was bad, she gained 8kgs, very puffy, her bloods were all over the place. After a week in local she was transferred to ITU at GOSH, thankfully it was just for 24 hrs and then transferred to gastro ward. Having scans and correcting her bloods she stayed there for 2 weeks. We were then discharged to wait for a pancreas specialist, who we saw on 25th Sept. She has an issue with her pancreas which won’t cure her pancreas flares, but could help with the pain she still is getting, this is up to Beth to decide. Beth is also still bleeding and has been for well over a year. She had an op in May to do a mucus fistula so we could do recycling. We did start this, then she ended up with her pancreas flare (only new thing we had done) so that was stopped, plus it didn’t make any difference to her bleeding. She is still on steroids as every time we reduce the steroids she bleeds. She has a puffy face due to the steroids.

Beth is still suffering with pain in her ribs, back and bowel. We are waiting for a meeting with gastro and surgical for the next step.

Beth’s peg is infected and unable to move and not draining, as Beth chooses to drink water as on free drainage, but as not draining. She’s being sick, she’s had 2 lots of antibiotics and it’s still there so waiting for a date for them to go in and have a look to see what’s going on.

Beth is in her last year of seniors, so will be doing exams soon. At this moment in time Beth has tutors to the house for a couple of hours which she does struggle with. Beth is doing really well in Maths, English, but on the other hand not great, but we have been told not to push her as she has until she’s 25 to do exams. Beth still does cooking and she can get a BTEC for this. Beth is also starting makaton by Skype, she’s like a guinea pig for this, for if this works, then it will be offered to others this way. By the end of it she will be qualified.

On Wednesday night Beth went to Jack Petchey, where she received a medallion, as her local hospital teacher nominated her a while back.

Update 25th February 2019

Thank you to everyone who sent Beth Xmas cards/gifts – we had a lovely Christmas. January and February have been tough months. Beth started bleeding again, this is after a few months on steroids, then the pain is bad, so back on steroids again until we see her surgeon in March. Beth has also been sick, her tummy doesn’t want to drain into her gastric bag some days, it results in Beth being sick, this then tires her more. Beth had a fab birthday, she was spoilt, but worth it. Thank you to everyone for her cards/gifts. Beth does cooking/baking 3 times a month. Today was rock cakes. I must say they were delicious. I was trying to be good as on a healthy eating diet. Well not today, just had to try them 😀. On the 13th Feb one of our dogs passed away, we were lucky enough to have Cookie for the nearly 4 yrs after we rescued her from dogs trust, but it was like she had been in our family longer. We miss her so much. We still have Patch who is about three who we rescued just over 2 years ago, who is the craziest dog but well behaved. 

Update 12th September 2018

Hi all, it’s been a bit manic here. Health-wise for Beth we are still in same position as before. Beth is having her yearly tests MOT next week, plus also having her Hickman line changed, as she has a cyst by her line which will not go. We have tried dressings, oral antibiotics ,then IV antibiotics but still the bugger won’t go, it is more painful when her TPN is running. So this will be done on Tuesday. Beth is missing her brother because he’s on deployment with the army, but hopefully back in November.Her sister Rebecca is going into the Navy at the end of September to start her training.

Schooling is not going great, she has started doing cooking after school (it took years to find someone), she also has one teacher that comes to the house. It’s the start of GCSE’s and at the moment Beth will be doing Maths, English, Science, then cooking in Btec. Beth also wants to learn sign language, so again waiting on school to find someone, as the school have had so much funding for her and not spent it on her. But Beth being Beth just keeps smiling.

Update 17th October 2017

The results from Beth’s tests in November/December indicated that there is very slight movement in her bowel, so the decision was made to attempt a very small amount of feed in to her bowel, to offer some protection to her vital organs from the damage that her Parental Nutrition (feed into vein) can cause. Unfortunately, due to repeated infections caused by the fact that Beth’s skin colonises some harmful bacteria, that if it gets inside the bloodstream will cause a nasty infection, on one occasion leading to sepsis which was a very scary time. She has also had to have the line into heart changed twice. The trial has been delayed as there was a lot of things to ensure were in place, as Beth has had nothing except medicines into her bowel for over 3 years.
Following Beths “MOT” (these tests involve several scans and x-rays to check the condition of Beth’s bones and vital organs, it also involves several blood tests and colonoscopy/ endoscopy to view bowel from inside and take biopsies) it was decided to try the re-feeding, so Beth was admitted to Basildon to try the feed and due to prolonged low iron levels, she also needs to have a blood transfusion.
Beth now has another busy couple of weeks with hospitals as she undergoes the trial and transfusion this week, and then next week must have the final part of her “MOT” at Great Ormond Street, which involves having to lay still for an extended period with a mask on (which Beth hates with a passion) and breathe a special gas to ensure her lungs are working correctly.

Beth had the first part of her trial last night which involved her feed being pumped in at just 5ml/hr for three hours, this caused a slight increase in her pain and a massive amount of reflux, but being the brave girl she is, Beth is determined to carry on and get as much of the feed as possible into her to try and avoid having to take other medicines. We decided the best place to do this trial was at Basildon hospital, due to previous attempts causing very painful episodes of pancreatitis. Due to the amount of nutrition Bethany needs it will never be possible to completely stop the nutrients needing to go into the vein, but the hope is that the feed into the bowel will enable the time on PN to be reduced slightly.Hopefully things are starting to look up a little bit in what is a continuing battle with her body, and after several years of backward steps, her body may at last allow her to take a step forward.

Unfortunately the feeding trials that Bethany had last week did not end very well. We had to stop the trial due to the levels of pain Bethany was suffering, along with indications that her pancreas would have struggled and other symptoms.

Beth also had a lung scan which involves having to breathe in Krypton gas, gas which absolutely stinks and makes Beth feel really sick, in order to get a clear picture of how her lungs are developing.

She has one more long enduring day at Hospital coming up before we can hopefully get to enjoy a relaxing weekend away with some great friends, and an opportunity for Beth to interact with her friends and recharge ready for the next time they try to feed her. Beth is home schooled at the moment with a private teacher paid by the school, she does 3 hrs a week which she is managing . Beth still isn’t great, a lot of pain in bowel & tummy which we are struggling with.

Thank you to everyone that has sent post & gifts much appreciated xxxx

Update 25th January 2017

Bethany had tests on her bowel in November/December and we are waiting for results.
She has had a tough time lately with pain and fatigue, she still has tutors come to the house so she can still be educated, which is good as she can only manage an hour a day. Bethany is not behind in English or maths which is excellent, she is a quick learner. Over Christmas Beth was poorly with throat and chest infections and we ended up in A&E Christmas Eve because she had a temperature, so we had to be on the safe side because of her line. Thankfully it wasn’t to do with her line and she just needed antibiotics for the infections, other than that Beth has been the same: up and down.

Update 14th November 2016

We attended an appointment with a group of Beth’s specialists yesterday in order to discuss the next steps in Beth’s treatment. It was not the outcome we had hoped for as they are very nervous about taking the steps that are needed to make Beth’s life more comfortable.
Beth has been having terrible bouts of pain which are unexplained as her bloods are unusually within “normal” (whatever that is) limits. One thing that was found by chance is a level in her blood called carnitine which has been extremely low. This is not a part of the blood that is normally tested after the Guthrie test. This was tested after a recent clinic by chance due to the troubles experienced controlling her sugar levels. She is now on a supplement in order to increase the levels but this can take up to 3 months to start showing any effect.
At the moment of typing we are still searching for a Dr. that will see her with her pancreatic divisum, as whilst this is far from rare in adults it is virtually unheard of in children. We have been waiting 9 months now for this referral and still we are unable to find a Dr. on the NHS that we will see her.
As a result of this delay and the need to get Bethany in a position where she can start to return to school (she has been unable to attend since March) we are going to need to find a private consultant.
Before any decision is made on surgery for Bethany she needs to go into hospital for a weeks worth of tests, to see if there has been any sign of the intestine trying to recover from the failure it suffered over two years ago.Considering her colon has collapsed we are pretty sure there is no sign of recovery.
The tests involve her having a special catheter to measure the movement of her bowel either inserted through her PEG site (the hole near her belly button). If they’re unable to do this then it will have to be inserted into her nose and through her stomach into the intestine. Once she’s recovered from this she will have to have a tube (not the same one) inserted into her rectum in order to measure the large bowel and to see how bad the collapse and inflammation that showed up on her recent scopes is and whether the colon is adding benefit or causing more problems and needs to be removed.
On a positive note we have finally after lots of pushing by the school and specialist care team, managed to get a tutor to come in 3 times a week and tutor for maths and English Also one of the LSA’s from the school to come twice a week in order to assist Beth with the more practical side. Beth is loving being able to start learning again and is mega proud of the fact that she has a reading age almost a year above her physical age.
We have a date now for Beth to go into hospital, 30th November, she will be in for 10 days for these tests to be done. We have just had a few days at Little Havens Hospice chilling, which is nice. We are off to Disneyland Paris at the weekend thanks to Little Havens putting our name forward for this trip. Beth can’t wait. After that she will be in hospital, so it’s a much needed trip.
Follow Beth’s fund on Facebook for regular updates.

Update 20th September 2016

Hi all, Beth has been much the same as last month, up and down. She had scopes done during summer holidays, which have shown more problems, one of which is big; her large bowel has collapsed and is showing distal colitis. Beth has been put on more meds because of the colitis. She needs to be seen again by the motility team about the colon, but it does explain the pain she is getting in her back and bottom. We are still waiting to see a pancreas specialist, who is willing to see her as most only deal with adults. Bethany’s TPN calories have to be upped as she’s not gaining weight. Everything is tiring Beth out. If she does too much she becomes unwell, dizzy, feeling sick and drained. She is still unable to go school, but is getting a tutor, hopefully soon, she said earlier “I do more maths then English” lol. She hates English, as it’s a lot of writing/typing which she can’t do a lot of, as her hands get tired and painful. Maths she loves (don’t know where she gets that from). Beth is looking forward to meeting other families at the Chessington weekend.

Thank you so much Post Pals for organising this weekend and all the other bits you do for our children.

Update 19th August 2016

Beth is still up and down. She was in hospital a few weeks ago with another flare of pancreatitis, we are still waiting for the specialist appointment and it’s taking far too long. Beth has good days and bad days – more bad than good at the moment. She’s had a busy few days as her older brother passed out as a grenadier guard at Catterick, which was amazing. Then we stayed at a friends house for a few days. Now we’re back home she’s struggling as she’s overdone it. It’s not right a bit of fun can cause this, so unfair. We are at hospital next week for scans & scopes – more issues. We are hoping the scope doesn’t cause another pancreatic flare. We are not sure about Beth going back to school in Sept. We have to have a meeting, as before when we tried upping her school time, she became unwell and very tired. Sometimes she’d be there for 20 mins and it’d be too much, too many people, too much noise, pain etc.

Update 4th May 2016

It has been a hectic couple of months to say the least, with lots of out patients appointments and then the weekend before last, Beth’s pain levels started to increase significantly, resulting in her being admitted to hospital on the tuesday with another bout of her latest issue, which is pancreatitis.
Beth has been diagnosed with pancreatic divisum, which in itself shouldn’t cause too many problems.But when you add it into the mix with everything else that Bethany has, it has meant 6 bouts of pancreatitis in just under 2 years.This has not been seen before by her specialists, in all their years of medicine. There is no doctor in the UK that specialises in the condition in children, making it very hard, if not impossible to get advice.
Her surgeon in London wants to carry out a procedure that involves a lengthy operation, that has only been done on a child once and never on anybody with the extra intestinal problems that Beth has.So there are still lots of questions and checks to be done before a final decision is made. The operation will require a 2-3 month hospital stay for recovery and then more recuperating when home.

Beth was allowed out of hospital at the weekend, still not able to do much, as  her pancreas is causing a lot of pain, she’s on a few pain medications but they are not always working.We are still waiting for a call to discuss exactly what the surgeons want to do. In the meantime her pancreas levels are on the way up yet again, if they are she will have to go back into hospital, will update if this happens.

Update 28th February 2016

Beth had her new Hickman line put in a week ago! This means she now can go swimming at Little Havens. Beth is still struggling with sickness and pain. She is also suffering with dehydration even though her TPN bags are 4 litres  and she has 3750ml of that every night. She is getting tired very quickly and we just don’t know what’s going on with her at the moment. No one seems to be bothered or have a clue what’s going on, which is hard for us all to deal with .We have asked for a transfer of care to another hospital, so fingers crossed this happens.
Beth had her 12th birthday, so thank you everyone who sent her cards and gifts it cheered her up.We also told her about what Post Pals are planning, she is so excited as her favourite animals are giraffes.

Beth is trying school but it makes her very tired, causing her headaches.Thankfully OT is going in to try to give advice on what Beth needs, and to try it before phoning me to collect her.As you can imagine she goes in for an hour sometimes , then I’m called after 30 mins ,so by the time I’ve got home it’s time to go back. It is what it is and we deal with it as best we can.
Thank you again for your hard work in making Beth smile, which puts a smile on our faces.

Update 3rd January 2016

Firstly like to say thank you to everyone that sent Beth cards and gifts.

December has been a funny month. Beth still hasn’t been at school as she’s been struggling with pain and tiredness to the point of being sick! School have been fab and they have sent her a 1-1 to the house to do some work, but even that is a struggle for Beth at the moment. Beth has had lots of sleepless nights again with pain/sickness and feeling faint, we are hoping for an explanation for this, when we see her London consultant. We are still waiting on the genetic test for her genetic pancreas results and we’re hoping it will answer why her pancreas keeps playing her up, but it’s a waiting game. Beth has so many hospital appointments in January, 1 of which is for her new Hickman line to be replaced and PICC taken out. This should be done the 8th Jan, but at the moment Beth isn’t feeling great and has sore throat, so we’re hoping it clears up ASAP.

Update 2nd December 2015

Beth spent three weeks in hospital due to having an infection around her line (not in her line). But because of the type of infection it was, they decided they would remove the line and replace it with a PICC line until January, when a new Hickman line will be placed. She needs to have another two weeks of antibiotics just to make sure the infection has gone. Beth’s pancreas decided it would flare up, making her more poorly than the infection. The doctors have now decided it’s not after operations that it flares up, so it’s anything that can trigger it. They have done some genetic testing to hopefully find out why. She also had a scan which shows the pancreas is not right, so we have to wait for results before she is referred to a specialist. Her pain has been up and down, but the local pain team are fantastic, although she’s feeling sick more and more lately.  Her bloods are all over the place and this infection has hit her hard, tiredness is a big thing and anything she does makes her so tired. Bethany’s school has been fantastic and has done a plan for her 1-1 to come to the house and do a bit of work with her if she’s up to it. Then when she’s up to it, she can go to school and see her friends for an hour. When school and us feel Beth is ready for lessons again, then she can do an hour or so a day, hopefully this will be soon, as she loves school and misses her friends.

Update 13th November 2015

Beth has needed to be admitted to her local hospital because she has a pocket of fluid under her Hickman line, this has given her an infection and so she will be in hospital for another seven days, so they can give her IV antibiotics x

Update 22nd October 2015

Bethany started senior school which is great, she is doing half days as she’s finding it very tiring. She loves it there and has made new friends. However, her health is a roller coaster at the moment, both good and bad days.

Can everyone check they have the new address for Beth which was changed a while back, as post is still being sent to old address, thank you.

Update 5th September 2015

Bethany is still suffering and we will be trying something new at the end of September to try and treat her inflamed bowel. Beth has said she will try it once, but if it hurts, then no more. As she’s 11 years old we gave her the choice because it’s her body.

Bethany started senior school on Friday and everything has been put in place for her, including a 1:1 teacher who seems ok. Beth will only be doing half days because she gets very tired.

Thank you to everyone that has sent her letters/cards and gifts.

Update 23rd July 2015

Bethany still isn’t great. She should have had surgery to remove her large colon but during surgery the gastro doctor decided not to go ahead. We are not sure why as Beth still has same problems as before. Whilst in hospital Beth started having issues with her sugar levels and so now we have to carry an emergency kit with us until she goes in for tests. Beth had scopes that showed her bowel is inflamed but we have to wait for her doctor to come back from holiday for a plan. In the meantime Beth is taking things day by day, some are good and some are bad, but she still smiles.

Update 1st May 2015

Bethany managed to do an hour each day at school for a few weeks until Tuesday when she ended up back in hospital due to pain in her bowel. We are waiting for surgeons at GOSH to come up with a plan. At the moment they can’t keep the pain under control so we have a very grumpy Beth.

Update 7th April 2015

Beth is still up and down and has been in hospital for 12 days as we couldn’t control the pain.

Bethany donated Easter eggs to the underprivileged children in our area which was great. It’s Easter holidays now so we’re doing as much chilling out as she can before going back to school for an hour every other day.  Hopefully we can build these hours back up.

Update 11th January 2015

Bethany had a good Christmas and thank you for all the post and gifts sent for Beth and Rebecca. We went to Harrods with the respite team which Beth loved and then we had a quiet Christmas.

She went back to school for two days and then started feeling unwell, so she has stayed in bed for the last few days and has only come out of it to go and see the doctor. They don’t know why she’s in pain and suffering at the moment, but hopefully we can get her back in to school tomorrow, just so she can socialise.

We have lots of appointments coming up and hopefully this year is a better year for Beth and someone out there can help her.

Update 1st Deceber 2014

Beth isn’t great and is still up and down. She is struggling with just doing half days at school. There’s lots going on but still no answers.

Beth has a Lego advent calendar as she’s unable to eat and she is looking forward to getting our Christmas tree at weekend.

Beth would like to thank everyone for the post sent to her and her sister, as they both love receiving post.

Update 29th October 2014

Beth is still not great and tpn is still all over the place.

We have been away for a holiday and Beth was struggling with that but has tried to join in even though in pain and very tired.

Beth is going to try her first full day at school on Monday – hopefully she can cope but if not then at least we have tried.

Update 9th October 2014

Bethany is still struggling with school but manages half days. I’m glad to find out that she still manages good grades, despite the time she had off while in hospital.

This month we find out what respite hours we get as it goes to panel. Beth’s pn has also been changed yet again which has given her eczema. Roll on appointment with a consultant!

Update 28th August 2014

We have been home a few weeks now. We settled quickly doing all tpn and her other medical needs, but Beth still isn’t right and the pain in her stoma is getting really bad again. We saw her tpn doctor the other day but all they seem interested in is sorting her tpn out right now, as lots of changes need to be done and she’s lost weight. Our concern is that too, but so is this pain which needs to be dealt with. We know it’s her gene causing problems with the bowel (it coats it and stops it working) and considering not much bowel works now we are concerned it will stop working altogether. So we are waiting for local to get back from holiday.

We are still waiting for our respite as no one seems to want to deal with tpn or be line trained and the next panel meeting is October. Beth is hopeful in going back to school even if it’s just for a few hours a day and we have a meeting next week. Until people are trained in line safety I have to be with her, but Beth needs her space as well as being with us, so hopefully they can get in there quickly and train all Beth’s care people at school.

Bethany wants to say a massive thank you to everyone that sends her post. As a family we appreciate everyone’s support in keeping Beth smiling.

Update 29th July 2014

Beth now has a hickman line and is on TPN. She has so much going on with her poor body not being able to tolerate bowel feeding. She spent 82 days in hospital but we are now home and trying to deal with the big change.

Update 5th July 2014

Bethany is still in GOSH but hopefully not for much longer. They have been unable to feed her into her bowel so she will be going home on TPN for bowel rest and we will be coming back to hospital in three to six months’ time to retry feeding into her bowel. We are just waiting for a central line to be put in and TPN training.

Post Pals does an amazing job, thank you.

Update 3rd June 2014

Due to Bethany’s recent acute episode she has undergone an ileostomy and now also has separate jejunal and gastric stomas. She is also currently on TPN (total parental nutrition fed directly into vein). Before they discharge her from hospital they will try and reintroduce feeding into the bowel. If this is not successful then she will have to remain on TPN permanently and in hospital until alterations to the house can be made.

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Dion F

22 May 2014

Story written 2014

Dion’s heart condition was diagnosed at my detailed scan, where they said he would need three stages of operations which would help him but never cure him.

Dion’s first operation was done at a day old and he spent four weeks at Birmingham Children’s hospital before he was allowed home. He had only been home a couple of months when he got septicemia and a blood clot in his heart, which required another operation.

Dion’s second stage operation was done when he was around six months old. This went to plan and he was home a few weeks later and continued to do well. He had to undergo several cardiac catheters (camera to look at his heart) every so often to check things was going ok.

Around the age of 1 he had to have another operation to try and widen his aortic arch and after several attempts it worked.

Dion’s fifth operation was in 2007 he was aged 7. This was the third stage called a Fontan and we were in hospital for six weeks due to him needing to go on a special diet. He was home for a month and needed to go back in over Christmas 2007 due to a build up of fluid around his heart.

As of January 2014, Dion is doing as well as he can. Doctors have confirmed he now has heart block and will require a pacemaker within six months. Dion does not let his heart issues get him down, he tries to get on with things as much as he can.

Update 6th October 2016

Myself, Dion and Kaleb would like to say a massive thank you for everything and everybody’s kindness. We have decided to move on to let another little one have some happy post. Dion is doing OK at the moment and although he is due a pacemaker, we have no idea when as we have to work very slowly with Dion, but thank you from the bottom of our hearts.

Update 6th August 2016

Dion has been struggling lately to keep up with his friends, he is sick if he over does things. We have several appointments in August, all to do with his heart and also his weight/ height.  Dion has just recently started hormone treatment in the hope this will help him grow etc.

Update 11th July 2016

Dion’s MRI results came back and although they have said something’s slightly lower than last year, everything else is how it should be. Dion has just recently started his hormone treatment, he was so excited, as he really wants to be taller, like his friends. Many thanks to everyone for the boys gifts/letters postcards etc.

Update 2nd June 2o16

Dion has had a few hospital appointments and they are still trying all sorts of supplements to help with his weight. Dion is due an MRI of his heart next week, so will update once I know more.

Update 7th February 2016

Dion has been unwell recently with a bad cold and cough which put him in hospital for a day as he was being sick a lot. He is also sleeping a lot, so I have tried to get his cardiac check brought forward.

Update 3rd January 2016

Dion, Kaleb and I would love to say thank you so much to everybody for all their post. Dion has had a few episodes over Christmas where his heart rate has been really slow, this really knocks him down for a few days. His weight still remains an issue and dietitians have said to just feed full fat milks, cheese etc as he hates all the special drinks.

Update 9th November 2015

Dion has been doing well and is due a scan on his stomach in next two weeks as having a few issues.  Many thanks to everyone for the boys’ post.

Update 13th October 2015

Dion has had a good stable few months, although he is experiencing a lot of headaches and no one seems to know why yet. A big thank you to everyone.

Update 13th August 2015

Kaleb has been in hospital and had an operation recently so it’s been very busy here. Dion is doing well, though he recently had a 24 hour ECG and we’re waiting on the results at the moment.

A big thank you to everyone who sends post to the boys. Thanks to Post Pals for everything they do.

Update 8th July 2015

Dion had his yearly check up this month where all went well and his consultant was pleased with how his heart is doing. He has to have another 24 hour heart monitor in a few weeks and there is still concern over his weight, but this has been a problem for a long time now.

Many thanks for all the post sent to the boys and a big thank you to the WLPC group for our lovely paper cuts.

Update 2nd June 2015

Dion has been complaining a lot lately of chest pains, so we are counting down the days until we see the consultant, other wise he has been quite well.

A big thank you to everyone that sends the boys post, it is gratefully received and makes their day.

Update 1st May 2015

Dion is doing ok heart wise but is still struggling with his weight gain and height. He has had several appointments regarding this and at the moment they are keeping a very close eye on him. He is due a heart checkup soon so I will update with how it goes.

Update 2nd March 2015

Dion has been doing okay lately, he still gets very tired quickly so is having to take regular rests though. We recently had a stay at the hospice for some respite, which we all love.

Update 6th January 2015

Dion has been doing well. He has had the odd cold etc, which knocks him about for a few days though. Dion has to undergo another exercise test at the end of the month to keep an eye on his heart block.

Many thanks to everybody who sent Dion and Kaleb Christmas presents and cards, they were over the moon with everything and can’t thank everyone enough!

Update 6th November 2014

Dion has been doing well. He has recently undergone an MRI to get a better view of his heart and we are waiting on results. The cold is starting to affect him though and we do dread this time of year.

We would like to thank everyone for Dion and Kaleb’s post, you certainly have all made them smile.

Update 8th September 2014

Heart wise, Dion is doing well. However, he is still losing weight and not gaining anything at all. The hospital want to do more tests if this is still happened when he’s weighed in November/December time.

We’d like to say thank you so much to everyone who has sent post.

Update 31st July 2014

Dion has been doing as well as expected from his heart point of view. He is now on a special high calorie drink to help boost his weight though as he has dropped off the chart.

Dion and Kaleb would like to say thank you to everyone for their kind letters, cards, gifts etc. They will try to write some replies but this could take a while.

Update 8th July 2014

Dion has been doing well the last month and is enjoying all his lovely post. He has now had to start a special diet to help him gain some weight.

Update 1st June 2014

As of May 2014 Dion has been doing ok. He is due to see a dietician next month as he is losing weight. Due to all his fears Dion refuses any blood tests to find out whats going on.

Would like to say thank you to everyone that has sent post to Dion and Kaleb. To see their faces light up when they receive mail is magical. Thank you.

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Finley M

22 May 2014

Story written 2014

Finley was diagnosed with ALL Leukaemia in April 2013 after numerous tests to see why his lymph nodes were swollen. Chemotherapy soon followed and the frequent hospital admissions and visits began. After his first block of treatment we were told that Finley was high risk and his treatment would have to be further intensified for another 10 weeks. At the end of the 10 weeks Finley’s bone marrow results came back as high risk again meaning chemotherapy alone was not going to cure him. His only hope of a cure was by a life saving bone marrow transplant.

Jason and I were absolutely devastated. Finley is our only child and to be told that we may only have him for a few more months was not easy to accept, especially as he has been so well in himself throughout all his treatment.

We made the decision to go public with our story to help raise awareness of the bone marrow register and the need for more people to sign up. In October 2013 we held a recruitment drive on the Isle of Wight where the Island residents really showed their support, and over 4600 people joined the bone marrow register (2211 were in just one day).

We were told that Finley has a rare tissue type and a match could not be found for him, but luckily one was found on the cord blood register (where the umbilical cord is frozen from new born babies).

Finley received even more intense chemo in preparation for his transplant and was admitted to the children’s hospital in Bristol during November 2013.

We returned home from Bristol hospital at the end of January where twice weekly hospital visits were made at Southampton General for a few weeks to closely monitor Finley. These then reduced to once a week. Finley now only needs to go once or twice a month but is seen by the community nurses each week.

Finley has just reached 6 months post transplant and is doing very well although has had to have a few stays in hospital due to infections. He has just celebrated his 7th birthday which he got to spend with a few of his friends.

He has not been to school since summer 2013 and misses his friends a lot, however he does love his new Xbox console and iPad which was very generously bought for him.

We have three cats (Megan, Sammy and Smartie) who Finley loves very much and he is looking forward to being fully cured and having no more hospital visits so he can get his new puppy as promised.

Update January 2015

Finley celebrated his 1st year anniversary for receiving his bone marrow transplant on the 22nd November. We celebrated this by holding a party for all his friends and family and all those that have supported us throughout Finley’s illness. Finley dressed up as his favourite superhero (Superman) and arrived at the party with his girlfriend in a vintage American car. Party entertainers kept the kids amused whilst a band playing various music entertained the adults. We also got both Finley and his baby brother Sullivan christened the following day which was a lovely service.

Whilst at Finley’s appointment at Bristol Children’s Hospital last week we were given the best news in a long time that we can now treat Finley like any normal child with regards to illnesses. Before now for any illness/ high temperature etc we have always had to get in touch with our local hospital for advice and/or treatment, and more often than not spend a lot of time in hospital.

We have enjoyed a really lovely quiet Christmas at home this year, which is just as we wanted, especially after spending all of last year’s in isolation in hospital!

Finley has really loved receiving all his mail from Post Pals and cannot believe someone in Germany, USA, Japan etc, would think to write to him, let alone here in the UK! I would like to say a really big thank you to everyone that has kept Finley in their thoughts and have taken the time to write to him and or send him really lovely gifts, they really have put a smile on his little face. It is amazing to see how a postcard for your child can make a big difference to their day, especially when they are not feeling too great.

I think now is the right time for Finley to move on from Post Pals as he starts the new year being able to be like any other child his age. Your charity is amazing so a big thank you from both Jason and I too. We wish everyone a very happy 2015.

Update 30th September 2014

Finley has been doing really well and at the end of August had both his Mr Wiggly (Hickman Line) and tummy peg removed, which meant he could return to school at the beginning of September. He has also been enjoying swimming, something he has really missed over the last 18 months.

We are due to go on our first holiday to Devon soon. Due to all his appointments and medical needs it has not been possible for him to travel far for any time before.

Finley has really enjoyed receiving all his letters, cards, Dottie updates and gifts… thank you.

Update 24th July 2014

Finley has had a busy month! First he won an ‘Act of Bravery’ award through our local radio station for all that he has gone through over the last 15 months or so. He then became a big brother at the end of last month to our latest addition to the house hold, baby Sullivan, who Finley loves very much.

Finley has been back in hospital a number of times over the last week due to him feeling unwell. He had a few skin conditions arise on his body, tummy cramps and generally feeling unwell. His whole body then broke out in a rash and after a meeting with his consultant at Southampton General and a visit to a dermatologist, he was given the all clear, with it being nothing too serious. Looks like his body was fighting a virus of some sort and the rash was his bodies way of dealing with it.

Finley really enjoys receiving his own mail and loves all the cards and letters that are sent to him… they really put a smile on his face. Thank you all very much.

Update 2nd June 2014

Thank you for welcoming me to Post Pals, I have enjoyed receiving my welcoming cards and letters.

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Owen M

22 May 2014

Story written 2014

Owen was born on 9th September 2006 and everything was perfect.

My niece born 5 weeks later and it started to become evident things weren’t right with Owen. At three months old he had this breathing holding episode where he went blue and stopped breathing. I managed to get him around and we took him to A&E where he was examined. We were told he had bad reflux and he was sent home with Gaviscon. As the months went on things were still not right. He was still having breath holding episodes, he had no developmental skills, he couldn’t hold his head, a spoon, or even a rattle. Health visitors advised me that he was fine and nothing was wrong, he was just born a bit early.

He failed his 6-9 month check as he couldn’t weight bear – well, basically he couldn’t do anything. I was one of these first time mothers that didn’t have a clue. We took him to the doctors and he visited health visitors every fortnight and they all said he was a slow developer and to try for another baby to bring him on.

After his first birthday I got so fed up as Owen’s physical ability was of a four month old baby. By this point Owen started having physiotherapy and occupational therapy, we also gained a community pediatrician, but I still wasn’t happy.

I took Owen back to the doctor as he was 13 months old and still having reflux and vomiting food, and he wouldn’t really drink anything. The made a referral to the hospital paediatric team where Owen was assessed and another doctor was called into the room. Another assessment was done and my husband and I were told Owen needed an urgent MRI referral as he had severe global delay. Owen had his MRI scan and was sent home. We were in good spirits as we thought he had nothing wrong as the nurse said if there was a problem you will know before you go home. Nothing was said and we went home.

A few weeks later I was holding a positive pregnancy test and two days after that I was holding a letter saying Owen has brain damage due to lack of blood flow. I spoke to the paediatrician and I freaked out as I just found out that not only do I now have a disabled son and the cause was unknown, I was also pregnant too.

We were sent to genetics who believed Owen had a stroke inside the womb and his MRI scan was then sent to the neuro team at Oxford.

After a few months Owen underwent various testing including a lumbar puncture at John Radcliffe Hospital Oxford. At this point I was 21 weeks pregnant with my daughter and all tests that Oxford managed to get all came back clear/negative. Owen’s breath holding was getting worse and it was taking longer to bring him round. One day during a genetics appointment the genetics doctor finally saw it. He was not breath holding at all, it was something called salaam attacks, also known as infantile spasms (epilepsy) and was finally treated with anticonvulsants at the age 21 months old. Owen was also having painful urination which was later confirmed as an over sized bladder which turned into a bladder diverticulum.

Two days before Christmas in 2008 we were called to John Radcliffe hospital for a second MRI scan which confirmed brain damage and again they thought due to lack of blood flow. Owen also had a lot of blood tests taken. In February Owen had a surgical catheter fitted called a suprapubic catheter and he also had more bloods taken for a second opinion as the blood tests in December confirmed low copper levels and low cereoplasmin levels. A sample of hair was also taken. We had a clinic appointment with Owen’s paediatrician which was unplanned and we were called in. Two days later we were also called in to see Owen’s neuro and genetics doctor.

On 24th February 2009 at 14:15, I heard the words NO parent should hear. As you are aware Owen has had several tests done, unfortunately I have some bad news. Owen’s blood tests and hair sample confirm Owen has Menkes disease, for which there is NO cure. Owen may not live to see his third birthday. Menkes is a terminal condition and children (boys) often die in the first decade of life.

Owen’s life and ours spiraled upside down. He lost his ability to feed and became tube fed. He also underwent a bladder diverticulum removal in February 2010 with a gastrostomy fitted at the same time. In May 2010, Owen’s reflux got so bad he vomited his full 200ml feed and this would also bring on a seizure. He ended up being admitted with aspiration pneumonia and ten weeks later he was admitted again with aspiration pneumonia.

On the 9th October Owen was struck with aspiration pneumonia, again brought on by a seizure, which lasted over one hour. He wasn’t allowed his emergency meds due to his night time med that he just had and it could have stopped his breathing. In October we thought Owen was fine and would be coming home the following day. I went home just for one hour to have a bath – this was the first time I EVER left Owen at the hospital. I come back to find Owen in respiratory distress. I was told Owen was in a bad way and may need to go Leicester Royal hospital. The anaethetist came in and basically told me that he’s in the process of losing his battle and in the process of shutting down. They put a nasal passage airway in to open his airway and when it was inserted I was shocked by the amount of secretions that flooded out of Owen.

By October 13th Owen’s health continued to deteriorate. We were basically told to let him go and withdraw all treatment. He wasn’t going anywhere, he just started nursery, he was granted a Make A Wish trip, he had a new room just built, he was not going to die – that was not an option. Owen loves his life and all the experiences he’s had since his awful diagnosis. I demanded help as I wasn’t ready for him to leave me. I knew in my heart Owen wasn’t ready to go. It was understood children like Owen never come off ventilation, I was told nowhere had ICU beds, I stressed he has the care that he needs, he has full resus on his medical records.

Owen was put on a ventilator in the adults icu in our local hospital, he was transferred later that evening to Leicester Royal infirmary to PICU. He stayed there for 21 days, 14 days of that was on a life support machine. During his stay he got ventilation pneumonia, he was put on a CPAP machine called the nippy and this deflated his left lung so he went back on the ventilator. It was the most traumatic time for us all, including our 2 year old daughter.

Owen pulled through after me stressing at him and reminding him only he can make himself better. If he wants to go back to school and have his wish trip to Florida then only he can do it. Two days later Owen was off all breathing equipment and being transferred back to Kettering General hospital on the 5th November 2010.

Owen was very fragile and needed an urgent fundoplication operation. He had this on 27th January 2011. Owen has been going from strength to strength since. He also had his trip to Florida with Make A Wish and this was an amazing experience for us all. One day we would like to go back and show Owen more of Florida as he was still a bit poorly when we went.

We have been taking Owen to Disneyland Paris nearly every year as he loves Disney so much. In December 2011, three days before Christmas, Owen had an emergency suprapupic catheter fitted as his diverticulums returned but much worse than before. His bladder and diverticulums were retaining 1000ml (1L) of urine. He was home for Christmas but he just slept the day away as he was in agony and it was so hard to see him like this. As the months went on the pain never shifted, he cried a lot and even school struggled with him. During his 6-weekly catheter change it became evident what was wrong. Owen’s catheter was placed in the wrong place. It was too close to his urethra, the catheter went into his stoma as usual, but went down the urethra and out the normal route. He was screaming, it is every male’s nightmare, even Owen’s dad was cringing at this and as a parent it was difficult to watch.

After a few months it was decided Owen was to have another bladder op. It was originally decided he would have a mitrofanoff, a very complex procedure. I researched like crazy and as I wasn’t happy it was decided he was to have a vesiocostomy, a stoma which leaks out urine. The operation went well although there were a few complications due to scaring tissue which made the operation difficult. Owen has coped so well post op and he was happy again.

In November 2012 Owen looked so pale, he had a virus that just wasn’t shifting. After a week I was just not happy and I was completely exhausted too. I sent Owen into hospital where he was examined but sent home. Owen become very lethargic and was sleeping constantly so I took him back hospital. This time he didn’t go back home and I demanded he had a blood transfusion as his hb was too low. Owen isn’t a candidate for iron supplements as his ferritin is too high. Two days after being in hospital his health was deteriorating, he was severely anaemic, had pseudonomas upper airway infection and was also a C. diff carrier. It was another disturbing time, he was given treatment including a blood transfusion, and again it was questioned how far are we going to push Owen before we stop treatment. I stressed we never give up on Owen and we do what we can to get him better. He completed his treatment and was discharged from hospital on 23rd December. Owen was all smiles Christmas Eve laughing etc, but Christmas Day he was a bit off again. Boxing day came and Owen was vomiting so went back in to hospital. If Owen starts vomiting he becomes dehydrated quickly and needs potassium supplements. He went home the following day.

On New Year’s Eve we noticed Owen had spots so we started New Year with Owen having chicken pox! This could have taken his life but he managed it and battled through it at home – it was hard work but we got there.

Owen has been fantastic since then, all smiles and laughter. We celebrated his 7th birthday, which was awesome. He had a car called Kettering Mcqueen which he loved and he loves balloons too so he had a balloon modeller. A week later we took him to Disneyland Paris, he was cold but he had a fantastic time.

He is such an amazing boy and he make us all proud. He has met some awesome people including Mr Tumble which he met last year via Rays of Sunshine charity.

I would like to say thank you for reading Owen’s story, please share his page as Menkes is rare and isn’t often thought of when trying to find a diagnosis and is normally misdiagnosed as basic cerebral palsy. I am so grateful for being pregnant with my daughter, if it wasn’t for being pregnant with her then Owen may still be undiagnosed.

Update 20th April 2020

We would like to say thank you Beverley for Olivia’s book from Amazon. Also thank you Bev for Olivia’s card and thank you Dottie for Olivia’s letter etc. They are all fabulous

Update 19th February 2018

We have decided after 4 wonderful years it is time we moved on from Post Pals to enable another family the opportunity to experience this wonderful charity.

We never expected Owen would reach another 4 years but despite the hurdles thrown his way he is fighting his way through life and living life the best that he can.

Owen’s health is very up and down and very unpredictable.

We will miss you all at Post Pals but we have reached a point where I need to focus all my time on my Dude.

Olivia loves her pals and she will miss you all dearly.

Thank you for everything.

Love Owen and family.

Update 14th November 2017

Owen has had a great month as we now have have some information from the hospice Dr and Great Ormond street hospital which makes perfect sense to a lot of Owen’s problems, we are trialling a few different food supplements as a result of the new information we have.

We have had confirmation that his bowels don’t work due to his underlying diagnosis, unfortunately there is nothing that can be done apart from and intestine transplant which Owen isn’t eligible to have, he is now on an elemental food supplement to try and help his symptoms..

Owen also has a lot of episodes where he twitches a lot, this is also confirmed and pain and as he has a faulty central nervous system which makes Owen twitch which is sparked from the pain signals from the brain.

We have a list of symptom management for both issues, his bowels and all his dislocations.. Hopefully we don’t need you use the medications that are listed in his symptom management as we know his pain is the trigger of his dystionic movements..

Thank you so much to the sender of Owen’s marvel encyclopaedia it is amazing.

Thank you to the extra smiles team for the giggle ball it is so soft and funny. .

Thank you Debby for Owen’s badge and cards..

Thank you Carolyn for Owen and Olivia’s cards they are lovely to know we received a card for world kindness day. The stickers are lovely too…

Thank you Caitlin for Olivia’s amazing monthly project, the photo frame with London Paris etc is amazing.. Olivia said you are the best.  She loved all the Halloween gifts too

Thank you Beverley for Owen and Olivia’s card and  Halloween window stickers they are awesome..

Thank you Bev for Owen and Olivia’s cards and Halloween gifts, the glasses were awesome.

Thank you Amele for Owen’s card it is lovely.

Thank you to the students at the university of East London for Owen’s letter it is fantastic.

Thank you Dottie for our monthly news letter your Halloween adventures look amazing.

Thank you Marty for Owen’s Halloween card and the smile card they are lovely.

Thank you Tianna for Owen’s letter your works are so kind . Thank you so much for such a lovely letter.

Thank you Jane for Owen and Olivia’s card and Mr poppers penguin DVD. This is a great movie..

Thank you to each and everyone of you..

This year hasn’t been a good year in general but your post makes life feel that bit brighter..

Update 17th October 2017

We are currently trying to get answers for Owens on going issues and it feels like no one wants to know from a medical point of view. His care providers have stopped so it doesn’t help matters as he requires 24/7 care so I am extremely tried we are in the process of finding a new provider. I had a chat with my Gp and he has explained Owen has exceeded all the help he can from a medical point of view and it will come a point that nothing more can be done.

We were at Great Ormond Street yesterday and from this it was explained Owen will never have a gastroenterologist as his problems are his diagnosis and there is no cure for that. His bowels no longer work, they haven’t failed but they don’t contract like ours so whatever goes in comes back out. There is nothing that can be done to help. It was suggested the only thing is a intestine transplant but the will never happen due to Owens diagnosis. I have just arranged all his advanced care plans and wishes which has added to my fog.

Update 11th July 2017

The PostPals party was amazing and we really had so much fun..

I do apologise again for not posting with Owen and Olivia’s post, it has been so hard since my mum passed away.

I would like to say thank you to Debby Owen and Olivia’s cards containing stickers, badges, play money etc, they are all lovely, the jokes are fab too.

Thank you Prys for Owen’s letter, I must say your handwriting for 8 years old is amazing, it is lovely to hear from you. (Caesws school)

Thank you to the sender of Owen’s card with the rocket with the dog, it is lovely. The sender is from St Albans.

Thank you Ann for Owen’s card  (balloons with Owen in glitter stickers), it is lovely. Also thank you for the balloons and notepad.

Thank you Dottie for your newsletter with all your litter mates,  we love seeing everyone with their own Dalmatian. The postcard with the horse was just amazing, I bet it was lovely to see.

Thank you for the party invite, the party was amazing.

Thank you Thea for Owen’s Minion card, it is lovely to hear you love books too.

Thank you Beverley for Owen and Olivia’s cards and letters, the Dragon you made for Olivia is amazing, the tigers card and pin is lovely too. Oh you should watch minions, it is funny.

Thank you to the Extra Smiles Team for Owen and Olivia’s cards, light word panel and Alice In Wonderland colouring books, they are all fantastic.

Thank you Ellen  (Caesws co school, Y3). It is lovely to hear from you.

Thank you Karen, Toni, Conner and Snoopy for Owen’s card, it was also lovely to meet you all at the party. I hope Connor was ok on the journey home..

Thank you Milly, Fly and Moss for our funky pigeon cars? It is awesome. It was a shame you amazing dogs wasn’t at the party.

Thank you Kathleen for Owen’s post card from San Diego it is fantastic.

Thank you Ann for Owen’s Owl card, is is lovely.

Thank you Bev for Owen and Olivia’s parcels, the Star Wars picture is fantastic. The Horrid Henry audiobook is fab, Owen has listened to it a few times.

Olivia loves the scented ice cream erasers. The Haribos didn’t last long lol.

Thank you Charlotte from Bear Hugs for Olivia’s parcel, everything she had was lovely, she loves notepads and sweats. She wears the hair grip a lot too.

Thank you Caitlin for Olivia’s parcels they are awesome, the super hero one brought water to my eyes, the picture frame is beautiful. She loves the sunshine parcel too, I hope you had a lovely time in Scotland.

Thank you Ella for Olivia’s card, oh wow your drawing is amazing. Thank you so much.

Thank you Ann for Olivia’s card with the flower and glitter letter stickers, it is lovely.

Lastly thank you Stuff In A Box for your amazing boxes. They are fabulous.

Update 2nd May 2017

Owen has been struggling with his airway for the past few weeks. He is happy enough though so we have managed to avoid the hospital. He just performed in his school play called the Jolly postman. Owen was the car in Grease lighting, it was brilliant. Thank you so much for all the post the past month, I do apologise not sharing on social media all the post Owen has received, I have shared the post when his is happy and well.

The 3d card from the extra smiles team is fantastic.

Thank you Cheryl for all Owen and olivia’s post and gifts they are all fabulous, the jokes are great too.

Owens card made with animal poo is fascinating, it is awesome, just shows paper/card can be made from anything.

Olivia’s post from your trip from the sea life centre is lovely. We hope Ray of sunshine enjoyed his day there.

Also thank you for both Owen and olivia’s Easter cards.

Thank you Bear hugs for Owens lovely parcel, we have had fun playing with the paints and the ball is awesome too, thank you again

Thank you Ammie for Owens Easter card your minion drawing is fab.

Thank you Debby for Owens lovely card. We love it thank you again.

Thank you to the Oxford university for Owens pirate card, it is amazing.

Thank you Jen for Owens post card from Singapore, it is fab.

Thank you Alison for Owens beautiful handmade Easter card, it is lovely.

Thank you Chloe for Owens card and gift,  they are lovely.

Thank you Ann for Owens awesome robot card, it is fantastic.

Thank you Charlie for Owen’s card it is fantastic, Captian America is one of Owens favourite’s.

Thank you Bev for all Owen and olivia’s post and gifts they are all fantastic, the star wars DVD and card are awesome..

Thank you to the sender of the panda card. It is lovely. I apologise I can’t read your name, I think it is Ameth.

Thank you Tj for Owen’s card and thank you for the kind words, they truly mean a lot.

Thank you Tamara for Owen’s card, thank you so much for the gifts, the bath fizzers smelt lovely.

Thank you Marty for Owen’s Easter card, it is lovely.

Thank you Lyn for Owen and Olivia’s easter cards, they are beautiful. Owen’s card is lovely and glittery.

Thank you Vikki for Owen’s Mr Tall sunflower kit. It is awesome.

Thank you Dottie for Owen and Olivia’ newsletter they are fantastic as always. Your eggs looked like they were cooked perfect.

Thank you Jenny for Olivia’s Betrix potter card it is lovely.

Thank you Milly, Fly and Moss for Olivia’s card it is lovely, we always enjoy your adventures.

Thank you Caitlin for Olivia’s easter post, she absolutely loves her little chicks.

Update 6th March 2017

Owen has had a better month, still not quite 100% he is having episodes where he forgets to breathe, we have no idea what this is or why he is doing this.

Thank you so much to the extra smiles team for your amazing Disney box, it felt like Christmas here again. The gifts are just amazing.

Thank you Cheryl for Owen’s Star Wars sound book it is amazing and he loves it so much.

Thank you Dottie for your cute news letter, your holiday looks amazing.

Thank you Milly, fly and Moss for your card and letter, it is always a pleasure to hear from you, your adventures are amazing.

Thank you so much Piper the red setter for Owen’s card, you sound so adorable.

Thank you all so much for making us smile.

Update 15th February 2017

Sorry for not posting on Owen’s page with all his post this month, we have had a very emotional month with the loss of my mother, although it was expected it was was sudden and a shock to us all.

I have been so out of sorts to keep updated as not long after my mum passed away Owen become really agitated and simply not right, with this he went to hospital and needed a blood transfusion, he hurt his arm which is already dislocated which didn’t help matters. He went on antibiotics on the just incase he had an infection and we were admitted for almost a week.

Thank you to everyone that that sent their love and support over the past 3 weeks it truly means a lot.

Owen has received a book from Andrea which has come from all the way from New Zealand, thank you so much for the book and card they are fantastic.

Cheryl thank you so much for Owen and Olivia’s seasons project. Their books are lovely, Owen’s cd it great too.

Also thank you for our Chinese New Year cards and lucky coins.

Thank you Bev for both Owen and Olivia’s valentines cards and gifts, Olivia dough robot it great.

Also thank you for Owen’s Star Wars watch and Olivia’s Tsum Tsum purse. They are awesome.


Thank you Dottie for Owen and Olivia’s newsletter, they are great as always.

Thank you so much Caitlin for Olivia’s Seasons’s project, she loves the hand warmers, hat, she loves them all.

Thank you to everyone that sent post cards and letters.

All your post has made us all smile.


Thank you Cheryl for Olivia’s Nomination bracelet, it is beautiful, she said my post pal really must like me.


Thank you Caitlin for Olivia’s package which arrived this morning, with the oreo’s stickers and play doh they are all great and all her favourite things.

Thank you to the Extra smiles team for both Owen and Olivia’s 3D card they are so awesome. We love them.

Also thank you for the Marshmallows kit that was amazing, thank you so so much. The strawberries and cream was our favourite.


Thank you to the senders of the Hong Kong post cards they are fantastic.


Tony Stark your Iron man drawing is amazing, thank you so much.

Thank you Marty for our lovely card.

Thank you Philip for Owen’s post card your iron man drawing is fantastic.


Thank you Rhy from Australia for Owen’s post card it is lovely.

Thank you Sinina for Owen’s post card, Thor is our favourite.

Update 5th January 2016

Owen has had a very good November and December. We have had plenty of smiles. We have had reports back from Great Ormond Street from Owen’s admission in October and they remain inconclusive, which is exactly what we didn’t want to hear, so we are still unaware of what Owen’s pain is. As the result is inconclusive we have approached wheelchair services to review Owen, as we have conformation of 2 unusual dislocations of his elbows, and both wrists are dislocating as a result of this. Both issues can not be repaired as Owen’s low muscle tone is the cause. Owen’s scoliosis is fixed now which is upsetting as it has left Owen rotated to the right, leaving his right shoulder curved and also at the point of dislocating. But despite this he smiles and battles on.
He had a blip on New Year’s Eve which could have ended up bad but we managed to get Owen stable again and he is ok again.

I am overwhelmed with the continued support of you all at Post Pals. It hasn’t been the easiest of years, especially as my Mum has got incurable cancer, and 2 weeks leading up to Christmas we found she has secondary cancer on the brain which again can’t be cured. So I do apologise if I haven’t kept up to date on sharing photos of Owen and Olivia with their post, it has been quite a tough time. Everything 2016 brought; with Owen almost losing his life in May as well as his ongoing issues and as well as his new issues, plus my Mum’s cancer has played heavy on us all, especially Olivia, she become so insecure and felt so low it was heartbreaking. Owen’s Facebook page ‘Owen’s fund menkes awareness’ has now changed to ‘Owen’s life with Menkes’. It was changed to ‘Owen’s fight with Menkes’ but fight wasn’t the right word for Owen’s page.

Thank you to everyone for your wonderful post.

In November, Owen and Olivia received letters and gifts from Isabel, Grace, Matthew, Ayran, Rudi and Oliver from 2nd Norbiton cub pack. Thank you so much for your kindness and your letters were so lovely and perfect.

Thank you Robyn for Olivia’s letter, oh wow you love Queen too, how awesome. Giraffes are cool, they are lovely animals.

Thank you Henry and Olly, Owen’s letter is fantastic.

Thank you Frank for Owen’s postcard. Wow, a pilot, how awesome. Owen loves planes, but unfortunately due to his general size and poor muscle tone, we simply can’t fly any more.

Sophie, your letter/card is brilliant. Thank you for telling us about you. Owen and Olivia have been in a fire engine too.

Thank you to the sender from Australia, the postcard with 2 dogs on it is lovely.

Thank you Kathleen, all the way from San Diego, for Owen’s postcard, it is fab and colourful. Post always makes us smile.

Thank you so much Kim for Owen and Olivia’s plate for Santa and his reindeer. It is beautiful, thank you so much for the card, too.

Owen received a letter from students in France. Thank you so much Julien, Pierce and Tomas. Thank you so much for thinking of Owen, your letter is brilliant, we like the cinema too. Your drawings are perfect.

Bev, your advent calendar was just wonderful and Olivia loved it so much. It lifted her emotions so much, she appreciated everything that you sent. Thank you for Owen’s Horrid Henry audiobook and his plush penguin, they are fab. Owen loves his audiobooks.

Cheryl, thank you so much for Owen’s Card and Star Wars fibre optic lamp, we love it. Thank you for the Star Wars ice cube trays, they are fantastic, we used them as jelly moulds and ice cubes. The glitter jelly was lovely too, the galaxy chocolate was lovely and went perfect in the Star Wars chocolate moulds. Thank you so much for all the DVDs you sent from Nov until Christmas, we failed to source a good advent for Owen so we had a Christmas book and Christmas DVD every day until Christmas. A massive thank you for all the wonderful Christmas presents you sent, they actually made me an emotional wreck but in a good way. What you have done and sent during 2016 is amazing I simply cannot thank you enough for all Owen’s DVDs, BB8 light which is always on at night, his blanket is getting plenty of use, the tops will be perfect come spring/summer. Olivia’s scarf is perfect and she looks beautiful in it, she wears it all the time, she is actually out with her Oms as we speak wearing her scarf. It is genius, all scarfs should be like that, it is amazing. She loves the Build A Bear clothes but she didn’t want to use them on her troll poppy, but as she has another build a bear that she calls Star, she changed her multiple times a day. She loves them so, so much.

Caitlin, thank you so much for Owen’s December parcel, she squealed in delight with the Pokémon annual and the T-shirt, she loved the chocolate lollies too, she loves them all. Olivia has enjoyed all your post during 2016.

I don’t know who the sender of the silver star paper was but Olivia loves her gifts, especially her pencil case and pencils, the beads, the whole package was perfect.

Thank you so much Mal for my lovely chocolates, I am eating one each day as they are lovely. Owen’s Star Wars headphones are perfect, Olivia’s little mouse is perfect, she loves it so much. Thank you again.

Thank you to the Elves, Dan, Kia and Orla for Owen’s Christmas card and ice cream playdough maker. It is great, we have had so much fun with it.

Thank you to Elf Shanks for Owen’s Minion lamp, Minion fibre optic lamp and joke book, Owen loves jokes, they are all perfect.

Thank you to Sylvia for Owen’s Marvel blanket, it is lovely.

Thank you Elf Sarah for Owen’s card, Minion blanket and Minion lamp, they are lovely.

Thank you to all the Extra Smiles team for all your cards, the pop-up tree decoration card is fantastic. The advent card was perfect. Also, thank you for the Christmas photo booth, it is fantastic and Owen loved most of the props.

Thank you Mrs Hall for your Christmas card.

Thank you Vicki for Owen’s card, it is lovely.

Thank you Becky & Mark for Owen’s card, it is lovely.

Thank you for Owen’s handmade card Niamh & Bo, it is perfect.

Thank you to the sender of the Santa card the drawings inside are wonderful.

Thank you Jenny for Owen’s handmade card, it is lovely.

Thank you Andrea for Owen’s card. it is lovely.

Thank you so much Emily for Owen’s card. it is lovely and lovely to hear you like Marvels too.

Thank you too all the Elves that sent cards and letters they are all wonderful, we love Elf mail as it makes Christmas even more special.

Thank you Amy for writing and making a card for Owen, it is lovely.

Thank you so much Alice for your card and writing about yourself. So sorry to hear you have your own battles too, I hope you have had a wonderful Christmas and managed to stay well. Take care.

Thank you Claire for Owen and Olivia’s cards, they are lovely.

Thank you Lindy for Owen’s cars card, it is perfect.

Thank you so much Kate, Xander and Rowan for your Christmas card. I hope all is well with you all and we hope you had a wonderful Christmas. Thank you for being our pal in 2016.

Thank you Ann for Owen’s cute bear card, it is lovely.

Thank you so much Denise for our card, it is perfect.

Thank you Despina for Owen’s card, it is perfect.

Thank you Marty for you card, it is lovely and glittery.

Thank you Annie for Owen’s card, it is lovely. I will send you a separate email to thank you too, Judy, in case your parents don’t read this comment.

Oh wow, princess Elsa for Olivia’s card, she loved it so much.

Awesome Thor for Owen’s card, it is amazing.

Thank you Lyn for Owen and Olivia’s card, it is amazing. I love what you do with your cards, thank you for my card too. I hope you have had a wonderful Christmas.

Thank you Corné from the Netherlands for Owen’s Christmas card. Owen likes all kinds of music, Sia and Taylor Swift are his favourite at the moment.

Thank you Minah for Owen’s handmade card, it is brilliant.

Thank you to you all at 2nd Upper Lancaster Rainbows for Owen’s Christmas card, it is beautiful.

Thank you to everyone at 1st Singleton Brownies for our cards, they are beautiful.

Thank you Leon from scouts for Owen’s cars, it is lovely.

Thank you so much to all the reindeers, you always make our Christmas special and make all our worries fade for a while, you all help us lift our spirits and we are so grateful for our cards. You all, combined with everyone else, has made Olivia feel so much better and she isn’t as OCD like she was in August.

Thanks Mrs Claus for your letter and recipe North Pole mail, always makes us smile.

Thank you Sean from 14 W.O.T.H Scouts for our card, it is lovely and sparkly.

Thank you Jane (Skye) for our card and Owen and Olivia’s stickers, they are lovely.

Thank you Dottie for all our news letters The Coca Cola truck looks awesome. You looked nice and cosy on the sofa too with your blanket. Your newsletter with Milly, Fly and Moss is awesome too, you always have amazing adventures. Thank you for our card too it is fantastic.

Thank you Milly, Fly and Moss for our Christmas card and your Christmas story, it was fantastic. You should write a book as it was so fun to read.

Hi Sarah, thank you so much for Owen and Olivia’s letter with the Japanese dogs that have cube hair cuts and the hedgehog cafe in Tokyo letters, they are great. Olivia said the dogs look like they are from Minecraft. The stickers are awesome too. Thank you again.

Thank you Katie and Rachel for Owen and Olivia’s handmade card, it is lovely. I hope you got a visit from Santa too.

Thank you Maria and Michael for our card, it is lovely.

Thank you Chloe G for Owen’s card, it is lovely.

Thank you all again for everything.

Update 16th November 2016

We have been to Great Ormond street hospital for investigations to try and figure out what is causing Owen’s pain and at this moment in time all his tests are inconclusive. However we have had their orthopaedic team review Owen too, they have also confirmed unusual dislocations of both elbows and unfortunately his wrists are dislocated too we have options of surgery but at this moment things are still on hold as test results are still pending.
Despite this Owen is smiling and more alert, Gabapentin has helped his state of mind and it is lovely to see him chuckling again.
Apologies for being slow posting Owen and Olivia’s post, everything is still crazy here and we haven’t had 5 minutes to breathe, to receive post from everyone had been lovely, I have been an emotional wreck myself, most of the messages sent have brought tears but in a good way, I have been overwhelmed by everyone’s love, care, compassion and generosity.
Olivia has also been hit emotionally as our life had been tough this year, we are slowly coming out of the other side but she still remains insecure. We had recently suspended care as we needed family time but I was informed I need care in the house as I never stop, so now care is slowly coming back into our home so hopefully Olivia with regain her confidence again.
Owen has had a bad year but he has given a good fight and is now smiling.

I would like to thank everyone for being you. You are all amazing.
The extra smiles team you are simply amazing and we can’t thank you enough for Owens amazing lights. They are very long too and are perfect in Owens bedroom, also thank you for Owen’s heart card, your joke made us all laugh. Caitlin thank you so much for both Olivia’s monthly projects, the fairy project was lovely and she too loves her feather lights. She collects erasers and her fairy erasers were perfect. She absolutely loved the opposite monthly project, the glow sticks were fantastic. She loved the hot chocolate and the chocolate milkshake straws, the books are fantastic too. She absolutely loved the fairy, the letter and the dust was magical. We both had tears as it was just perfect and just what she needed to make her feel special. Thank you Cheryl for Owens monthly project, the Audio book, book, DVD, and bird are all perfect and thank you for both Owen and Olivia’s Mr and little miss books and balloons. I love your personal messages inside the books too. Olivia absolutely loves the ladybird you sent her she plays with constantly. The stickers are lovely too. Also thank you for both their elf letters too, Olivia is in the process of replying back. It will have to type Owen’s reply out as I was originally going to do hand on hand but I am worried about his wrists and arms being dislocated.
Hey Bev, thank you so much for both Owen and Olivia’s post. Owen enjoyed his horrid Henry audio book and Olivia loved the home play clay and DVD.
Your cards are fabulous, they always make me smile as well as Owen and Olivia.
Thank you for your postcard from Wales too. It is lovely to hear you had a lovely time.
Thank you so much Dottie for all your wonderful news letters, haha I did have my suspicions about peppa pig world with your post card. Your peppa pig news letters went down so well.
I did love the chessington one too as we had the pleasure to meet you unfortunately I didn’t get a photo opportunity with Dottie as Owen was unsettled in pain so Owen was having a lot of mum cuddles.
Milly, fly and Moss, thank you so much for our lovely cards, your Halloween one was spooky, but we did love your jokes.A huge thank you for Olivia spy dog and cat books she was dancing around the room with them as she knows of these books.We love hearing about your adventures.
Thank you Marie Micheal for Olivia’s cross stitch notebook, glitter pen and book they are lovely, she loves them so much.
Thank you Anne from Norway for Olivia’s ornamental lambs and pen crayons then are lovely.
Thank you Poppy for your lovely Tiger card, Olivia enjoyed listening about sparkle the dog.
Thank you Jill, Grace & Henry for Owen’s glow stick, it went on for days. Olivia absolutely loved her sweetie bag too.
Thank you Simran for Owens lovely minion card, it is perfect. He likes any car really. He likes lightning McQueen. He has a friend that has a real car that looks like McQueen.
Thank you Susean for Owens minion card. It is lovely. Owen’s favourite song is Sia chandelier.
Thank you from everyone involved at the university for Owen’s card, it is lovely how it is made from Superheroes, the card is amazing and perfect. Also thank you for including myself and Olivia in the card. It make me smile.
Thank you to the firer fighter sender from Singapore for Owen’s card with the fire engine and car it is amazing.
Thank you Ann for Owen’s cute dog card.
Thank you Brad for Owen’s minion card, you are awesome for taking the time to make and send a card.
Thank you Lancia for Owen’s letter and keyring, the keyring is perfect. Ooh his favourite Disney movie, there are so many, Cars and Beauty and the beast, The live Dinsey Cinderella movie.
Thank you Marty for Owen’s Halloween card, it is fantastic.
Thank you Annie for Owen’s Disney Halloween card it is perfect.
Another thank you to GK unions university for Owens card with various stickers on it is cool.
Thank you Annette for Owen’s Pinocchio card, it is lovely.
A massive thank you to each and everyone one you that sent gifts, letters, poems, cards and letters from Nationwide building society. This is so very thoughtful of you all and very much appreciated. Thank you again.

Update 4th October 2016

Owen has been really good this month, he started Gabapentin to help with his pain and it is taking some of the edge off. He is due to go to Great Ormond Street hospital next Tuesday for more investigations and symptom management and respiratory review with discharge with a new breathing machine.

Thank you so much to everyone that sent post.
Cheryl, thank you so much for Owen’s lovely canvas and Simpson dvd. The post cards are fantastic especially as Owen is a huge star wars fan.
Thank you to the extra smiles team for both awesome boxes. Olivia’s wall decals are fabulous, the theater is great and we have all had a great time with it. The hungry caterpillar photo frame is beautiful.
Also thank you for the clay charms from Amazon Olivia got stuck into it immediately.
Thank you Bev for both Owen and Olivia’s photo booth props they are fantastic.
Also thank you for your lovely cards too.
Thank you Dottie for our newsletter, Gala day looked so much fun.
Thank you Marty for Owen’s card, it is lovely..
Thank you so much Caitlin for Olivia’s letter which was written by Georgia at Rainbows, it is lovely.

Thank you so much for all you support it truly means a lot.

Update 14th September 2016

Owen has had a reasonably well month, it hasn’t been perfect by any stretch but he is doing ok. He has just reached his milestone birthday which is 10 years. 10 years old and Owen is still here enjoying life the best he can.

We have had a hectic few weeks, despite Owen’s hourly pain/upset, we still don’t understand what is the cause. We managed to go to our friend Lewis J’s Ray of sunshine party, which was fantastic, Owen had oramorph to see if this would help him enjoy the party but unfortunately it didn’t, the gripes are still present.

We also managed to enjoy a fantastic weekend at Chessington with post pals, we made the mistake of giving Owen oramorph again as it shut him down and made him all the more agitated the following day.

Our highlight of this weekend was having the opportunity to spend time with amazing families and spend time with the people that help make my children smile, Olivia especially as she is becoming low lately and is starting to shy away from life. She loved the air walker in our room, it was a dog who she called Alex.  We loved the private meet and greets and we all had the opportunity to meet up again with families and the animal meet and greet was superb.

The whole weekend was just fabulous and I have to do a big shout out to Vikki George and Jaymee Fletcher for everything at Chessington it was fantastic and just what we needed. Also thank you for Owen’s gift too, it is lovely.

This weekend we celebrated 10 years of Owen, his party was just out of this world, he had authentic star wars characters celebrate with him. Videos and photos are on Owen’s page, Owen’s fund menkes awareness.  It was epic and perfect and despite his pain he battled through and was vocal, happy, and the Mr chuckles we all know and love.


Thank you everyone for your lovely post this month and Owen’s birthday cards.

Thank you Andrea for Owen’s Owl cushion he loves it and snuggles into it, it is soooo soft.

Also thank you for his card it is lovely.

Thank you Jenny for Owen’s lovely dinosaur card, it is lovely.

Thank you so much Owain Murphy from Holland for Owen’s lovely Winnie the poo card

Thank you so much for Owen’s birthday card it is lovely and thank you for your post cards with the otters, Stormtrooper and fighters card with the Jones, also thank you for Owen’s post card from Brighton and the card with the Owls. They are all great and perfect.

Thank you so much for Owen’s rainbow boom and rainbow award. They are lovely.

Thank you Dottie the Dalmatian for both Owen’s and Olivia’s news letters they are fab, you loom cute in your wellies, I also loved the news letter featuring all the wonderful post pals with their litter mates.

I absolutely love Owen’s birthday card too, it is fantastic.

Thank you Kristie for Owen and Olivia’s post card they are both adorable. We have a little zoo near by called Hamerton Zoo, it is nice.

Thank you to the extra smiles team for Owen’s awesome rocket birthday card. Thank you for Olivia’s card too, it did make her smile, also thank you for Owen’s extra smiles card too. It is lovely.

Thank you Sonia from Germany for both Owen and Olivia’s post card, stickers and stamp.. oh wow talk like a pirate day is only in a few days in hamburg.

Thank you so much Despina from the USA for Owen’s birthday card, it is lovely.

Thank you so much Caitlin for Owen’s epic birthday card, I love it, also thank you for Owen’s foam stamps and neon paints, they are perfect.

Also WOW Caitlin, Olivia’s monthly project was brilliant, your adventures sound amazing and to have gifts from every place you visited was fantastic and thank you for my shell candle, it is lovely, Olivia was amazed with your package. Thank you again.

Also thank you for Olivia’s around the world poster, she loves it.

Thank you Lyn for Owen’s awesome minion card, it is lovely.

Thank you so much Chloe for Owen’s birthday card. It is lovely thank you.

Thank you Kate, Xander and Rowan for Owen’s letter, he has had a very busy school holiday.. I hope all is well with you all.

Thank you so much to Kath, Rob, Ben and Alec for Owen’s Simpson card and money, that was lovely of you all.

Thank you Chris for Owen’s birthday card and letter..  I haven’t watched the new avengers with spiderman  but my favourite is between captain America and iron man.

Thank you Leanne for Owen’s birthday card, it is cute.

Thank you Holly for Owen’s lovely birthday card, he loves it.

Thank you Richard for Owen’s birthday card and letter, it is perfect.

Thank you Bev for Owen’s modelling clay and Owen’s book and cd they are fantastic.

Thank you Jeanette for Olivia’s card, it is lovely to hear from you.

Thank you Ann for Owen’s card, it is cute.

Thank you Rupert for Owen and Olivia’s letter and coloured sheet and stickers, it is lovely, Olivia loves to hear from animals, Owen does too.

Lastly thank you so much for both Owen and Olivia’s pop figures with candy they are amazing and they both love them so much.

Update 11th August 2016

Owen has had a stable month, although we have had a very busy month.
We had a nice holiday to Blackpool, although Owen is experiencing pain hourly sometimes a bit less, we still had a great time as Owen enjoyed Mummy snuggles on the bench, chair or anything we can find to rest. Although Blackpool is great for Changing Places, we made a lot of use out of them.
We have seen his new respiratory team at Great Ormond Street Hospital and his metabolic team and things appear to be moving in the right direction. Now we just need to get the appropriate appointments through to get Owen the right care.

Thank you to everyone who sent birthday cards to Olivia, they truly mean a lot. She is feeling low at the moment, and the cards did make her feel special.

Thank you Dottie for your lovely card. Also a huge thank you to Penny, Mark, Becky, Owain Murphy, Skye- Jane, Lyn, Maria & Michael, Milly, Fly & Moss for Olivia’s beautiful cards, they truly mean a lot.
Also thank you Caitlin for Olivia’s lovely card and Shopkins stickers and Shopkins surprises, they are fabulous.
Also thank you Bev for both cards for Olivia and her good dinosaur gifts and thank you for her clay that arrived today, she loves it so much.

Again thank you Dottie for your awesome splash post card and your newsletter.
It looks like Owen and Olivia’s favourite dogs had a blast at Dog Club.

Thank you Annette for Owen’s card.
Owen is enjoying the sunshine but he is getting a bit hot lately.

Thank you to the sender of both cards from Singapore, they did make me smile.

Thank you Skye for Owen and Olivia’s postcard with the Die cut from China, it sounds like you had a great time.

Thank you Bev for both books with audio CDs for Owen, they are fantastic. Owen has listened to mustard custard so many times, he loves it.
He will enjoy the pirate one that arrived today, too.

Thank you Milly, Fly and Moss for Owen and Olivia’s card, it sounds like you had so much fun with your new friends.

Thank you Hilary for Owen’s pirate sticker book and postcard, they are great. Olivia has had fun helping Owen with it.

Hi Kate, Rowan and Xander, I hope all is well with you all, I hope you had a great time at the cinema. Olivia went to see Finding Dory for her birthday treat.

Thank you Jasmine for Owen’s fabulous card from Singapore. Owen likes Thor too.

Thank you so much Toni, Karen, Connor and Snoopy for my England card.
I hope Connor loves his new cat smudge.

Thank you so much Jacob and Hallie for Owen’s lovely card and light up tambourine, they are awesome.

Hi Sarah, thank you so much for Olivia’s loom band set. She has made a few bracelets already.

Thank you so much Cheryl for Owen’s fabulous monthly project. Owen’s picture bunting is awesome, we love the sun catcher too, all the gifts are lovely, thank you again. Also thank you for your postcard, looks like you had fun at London Zoo.

Thank you to the Extra Smiles team, the sun catcher is fabulous and looks great.
Also thank you so much for the kite. Olivia is so looking forward to going out to use it.Again thank you to all, you are all truly amazing and you do make us smile.

Update 8th July 2016

A huge thank you for all our gifts this month. Maria: Olivia loved her package so much she takes her notebooks to school too. The rubbers, she absolutely loves them, the lanyard, everything they are all fabulous. Thank you so much Caitlin for Olivia’s wonderful project she loves them too. The heart you made is beautiful and is hanging in her bedroom. She still loves that outfit from last month. Also thank you for Owens postcard from New York, it is a place we would love to go too. Thank you Dottie for our playground postcard and strawberry picking newsletter, as always they do make us smile. Thank you Orla for Owens minion card and Minion zip pull and minion toy, they are great. Thank you Emily for Owens robot post card, we don’t have any pets, oh wow 3 dogs I bet they are so much fun. Thank you so much Jenny for Owen and Olivia’s stickers and play clay, Olivia loves that stuff, she makes people out of it. Olivia loves her jokes too. Owen likes marvel films. Thank you Ann for both Owen and Olivia’s card, Owens does look like a cheeky monkey.  Thank you so much Cheryl for Owens monthly project, the sun catcher is beautiful, scooby has been watched 3 times already. The books are great too.  Thank you to the wonderful extra smiles team, your star sun catcher did make me smile, we love it.  Thank you Kate, Xander and Rowan for Owens awesome finding Dory card it is fab.  We can’t wait to watch it.

I would like to thank you all for being amazing, supportive and you help us forget just for a short while, we haven’t had the best start in 2016 but you all help us keep strong.

Update 11th June 2016

Owen hasn’t been too bad this month, although his twitching episodes and epilepsy have returned. A switch of medication has caused the twitching. We have just recently had it confirmed that Owen has chronic dislocation on both elbows, it is the bone called the radial, the inner arm from your thumb.

Olivia is doing great. She is now officially a brownie and has her brownie badges for her promise brownie law.

Thank you Caitlin for Olivia’s by the sea project they are fab, she loves her outfit. Thank you Tracy for Olivia’s beautiful crochet card it is perfect. Thank you Nadine for both Owen and Olivia’s card they are perfect. Dottie your news letter is awesome and we have just received your postcard, you do have so much fun. Thank you Hotaro the magical fox for Owens card. Thank you Kate, Xander and Rowan for your card and your letter on the cath kidston paper, we love cath stuff. Oh wow riding for the disabled sounds so much fun, I went on a horse once when I was much smaller. We went butlins in the school holidays as the weather wasn’t brilliant we came home. Thank you Bethany for my cool monthly project of spots and stripes, the gifts are perfect

Update 12th May 2016

This month has been a mixed bag of happiness. Hayfever kicking in, then we were in hospital for 2 weeks for respiratory review that went in a horrible direction and led to conversations we didn’t want to hear. We are appealing and awaiting a second opinion.

It is all too complicated to compile into a Pal update, but some parts are on Owen’s fund page. I would like to thank everyone involved in the butterfly garden. We are still to buy our caterpillars, which we will hopefully do in the coming weeks.

Jenny, the parcel you sent was just amazing. Wow and wow, what a lovely international parcel – it is amazing – and thank you for the get well card. Thank you to Kanil, Jorge and Gareth  (UK unions students) for my card, it is fab. Thank you Dottie for both Owen and Olivia’s card and newsletters. Your adventures are just amazing, as always. RAF, oh wow, how awesome. Thank you Claire for my letter and Thomas the tank engine books. They are great, thank you, again. Thank you Lyn for my lovely Apple cards, they are lovely. Thank you for my Peter Rabbit CDs, Leanne, and email with the CD, too. The stories are great. Thank you Kate, Xander and Rowan for my postcard from Centre Parcs. I hope you all had a wonderful week there. I have heard wonderful things about Centre Parcs. Thank you Marty for my card too, it is lovely. Thank you Owain for my hippopotamus post card. It did cheer us up, thank you. Thank you Ann for my Spider-Man card, it is awesome. Thank you Bev for both Owen and Olivia’s card and finger painting book, and Owens awesome pirate book. It is a huge hit, we love all the hidden compartments in it, too. It has been read to Owen 5 times already. Thank you Debbie for Owen and Olivia’s card with stickers and a colouring page, they are fabulous. Thank you Dawn and Sky for the Disney projector, cards and the New Zealand animal, which Olivia loves. Thank you for all your support over the last few weeks, you are all truly wonderful people. Thank you so much Caitlin. Olivia loves her fabrics and scrapbook, they are are fab, and also thank you for my little gift, too, it means a lot.

Update 3rd March 2016

Owen has had a great month. We have had a few seizures, but it is manageable. Owen has been enjoying his music therapy and is playing the keyboard with the slightest touch. He is so vocal and happy again, too.

I would love to say thank you to everyone who has sent gifts for us all.
The crocheted blanket is so beautiful and is used daily. The interactive bird is just amazing and Owen loves it so much. He cuddles his duck/swan, too, he loves the texture of it. We absolutely loved the balloons, too. Thank you so much much Hayley for all these gifts, they truly mean so much and are very much appreciated. Thank you so much Merlinda for all your wonderful cards and gifts that were in the extra smiles box for Owen. The die card is absolutely beautiful, I love it, the valentines card it lovely, too. I accidentally opened the Easter card, too, that was in the box. All the handmade cards you made are beautiful, and thank you for all the Minion jokes, puzzles and goggles, too. Thank you to the people at the university for Owen’s card, too, it is fabulous.  Ann, your wild thing card is just amazing, I love it so much.  Thank you Dottie for your Valentines card and letters. We love your skiing note, it looks like you had a fabulous time in the snow. Thank you, also, for our note with our friends featured in it, too. It always makes us smile to see Dottie and friends. Hi Bev, thank you so much for both Owen and Olivia’s Valentines card. And the books are fabulous, Olivia’s book is just perfect, she has read it at reading time at school.  Hi Milly, Fly and Moss, thank you so much for Olivia’s card and Facebook post with the basketball. It is always lovely to hear about all your adventures. Thank you Caitlin for Olivia’s monthly project, the books are great, she has taken then to school to show her friends and she reads them at learning time. She takes all her reading books to school to show her friends and tells them about her Pals.  Her notepads are perfect, she goes through so many notepads, etc. as she loves drawing and playing school. Her activity books are great, too.  Thank you so much to the extra smiles team for all our boxes of gifts, and the balloon was just fabulous. Owen loves them balloons so much and he gets so much enjoyment out of them. We are still to make his jiggle stick from the box. All our gifts are wonderful and perfect. Thank you Abigail for your lovely letter for Olivia. I hope your parents evening went ok. Thank you Skye for always being there on Facebook messenger, it is lovely you always ask how we all are. It truly means a lot.

I would like to apologise for not posting everything in Owens fund menkes awareness page, we have been extremely busy finishing off our renovations, we are finally finished with it now. I would like to thank you all for your generous gifts, you are all very lovely wonderful people and you put massive smiles on our faces.

Update 6th February 2016

Owen has had a great month. Not many seizures which is fabulous. He had been so vocal which is just great to see. After being told he had a faulty spark in his heart, he had a cardiology appointment and it turns out his heart is actually very strong. Olivia has become interested in joining Brownies and hopefully she will be able to get a place after the Easter holidays. She currently plays basketball and is playing in a tournament tomorrow.

Thank you so much for the Candy Chaos box. They are always great. The dehydrated foods are just fantastic. We had so much fun doing them, the burger and chips actually taste like burger and chips. Thank you Skye for both Owen and Olivia’s book and bracelet, they are great. Thank you Dottie for our newsletter, cooking is very hot work. Thank you to everyone in China who sent Owen the Manchester United post, it was fabulous. It made me smile, and Owen, too. Thank you Abigail for your cute picture and letter. Your post did make me tearful and it was lovely to see post from a year old, it pulled on my heart strings. Thank you Sophie for Owen’s stickers, too, they are great. Thank you Kate, Xander and Rowan for Owen’s postcard. Thank you to everyone at the university for Owen’s superhero card, it was amazing. And thank you Maria and Michael for Olivia’s letter. Unfortunately we didn’t get any snow before Christmas, but she received a lot of presents.

Thank you again for everything, Post Pals. You are all amazing.

I will send thank you letters to you all. We are just in the process of major renovations in the house. When we have got everything back to normal then we will send you some post. Also, Olivia has been searching for her pal Hannah from last year. She has a letter for her but I lost everyone’s addresses as they were all on my phone and got deleted by accident. I believe Mrs Lambert is her mum. Could you please confirm if this is correct so Olivia can send her this letter and drawing?

Update 22nd January 2016

Hi everyone, I would like to thanks to Skye, Bev, Caitlin, Dottie, Moss and Candy Chaos for your post this month.

This has been a horrible month for Owen. As you all know he had a horrible 6 months with his epilepsy, so his medication was changed again only for this last anticonvulsant to cause a whole lot of issues. He had a very bad allergic reaction and we ended up being admitted into hospital. Following a blood transfusion, and due to the reaction which his skin was burnt from the toxin, he also contracted strep and also a urine infection due to his white and red blood cells reduced because of this medication.

Following this hospital admission, we have come to learn Owen has an issue with his heart and we are now under the cardiologist.

Over the past few days we have seen Owen being himself again – laughing and smiling.

When we received the Candy Chaos box he was having a good old rummage. It isn’t something he has done before which was fantastic to see.

We have just currently decorated his bedroom red and blue, and he absolutely loves it. He didn’t sleep much at all in pure excitement.

Olivia absolutely loved her treats from Caitlin, they were fantastic. she loves Leo the lion, and the hot chocolate and marshmallows were just awesome.

Skye, I loved the handmade windchime, thank you so much.

Update 3rd January 2016

Thank you so much to each and every one of you sweet Elves for making our Christmas special. Olivia absolutely loves all her gifts, especially the huge teddy from Florence and friends, the cat Beany Boo was a great hit too. Owen’s gifts are fabulous too; the box of various Sensory lights and tackle items are just fabulous. The Mickey Christmas DVD has been watched several times. All the books both Owen and Olivia got are just fabulous. Olivia already coloured her owl cushion on Christmas Eve. We loved seeing all the glitter on the lawn from all the Reindeer food and a wish was made. The wish was for a real horse,  lucky enough Olivia wasn’t too disappointed by the wish not coming true. The gifts from Mrs B’spoke gifts are just beautiful and will be treasured forever. Oh, and to the sender of Olivia’s frozen baubles, they are beautiful and went on our Disney theme tree just beautifully.

Thank you to everyone for your letters, cards and notes. It is so lovely to be a part of such a wonderful charity.

Also, thank you to all of our Post Pal friends that contact us via Facebook, either on my own personal Facebook or “Owen’s fund menkes awareness”. Your conversations, updates and generally checking how we are, it means so much, especially as Owen has had yet another horrid month. This time with his new medication to treat his epilepsy. He got a serious skin allergy from it. If we didn’t identify it when we did then things could have proved fatal. Owen is being a trooper and battling through it all.

He absolutely loved his presents, especially the funky Beany Boo monster that talks. It did make him laugh. Thank you, again, for your continued support, and thank you so much for being you. You are all wonderful people.

Update 1st December 2015

Owen has had a much better month, although his epilepsy is still problematic so we are due to change his medication again for the third time, so third time lucky, I suppose. He has really enjoyed the books that have been sent, especially the ‘I wish I had a pirate suit’ and ‘Pizza For Pirates’. Despite the change in medications again he is coping well and is more social.  The Candy Chaos box was just amazing, the popcorn was sublime. Thank you to all involved with this lovely treat. The popping candy was fabulous for Owen although he doesn’t eat he does have tastes. He finds the popping amusing. The monthly projects from Florence and friends are amazing. Olivia absolutely loves her cat costume, she wore it on Halloween and to a fancy dress party. I would like to take this opportunity, again, to thank you all for your wonderful post. It all means a lot and the smiles from us all are just immense.  Thank you again for your continued support.

Update 15th October 2015

Owen has had a horrid time with his epilepsy, which has been variable for the past year. He had his medication changed in July, only for them to fail him and he went on yet another new med in September. Now we are in October hopefully we are starting to get Owen back.

Hannah, Olivia has often spoken about you being her Pal. Please don’t feel we are ignoring you. Owen really has been in a bad place which has been physically and emotional straining on my part. I know we haven’t heard from you in a while. Again, please don’t feel Olivia doesn’t want to be your Pal. It really has been a real tough six months for us. I have changed my phone so all addresses that were on there have also gone, so anyone wanting post from Owen and Olivia please forward me your address and we will send something.

I would like to say a massive thank you to:

Florence and friends, you are truly wonderful people. Your monthly projects are just amazing and I appreciate the things you have sent Owen, too.The last project was fabulous and perfect for our holiday. Owen’s birthday present is fab, now his epilepsy is getting there he is having more enjoyment with his Olaf. Dottie the Dalmatian and Milly, Fly and Moss, your adventures have kept us all going and it has been fabulous today see all your adventures. It was lovely to see your litter mates on your news letter, always such a pleasure. The glow sticks and the little sticky sin go’s the sticky things actually got stuck on the ceiling and left a face print. Oops! Owen’s birthday cards were fab, too. A massive thank you to Toni, Karen and Conner for your fabulous birthday card. Love, love, love it. I hope you feel better soon, Conner. Skye, again thank you for your continued support via Facebook. Olivia loves her Frozen puzzle, animal cards and postcard. Your friendship means a lot.Thank you Tarya for Olivia’s wonderful postcard from Finland. I hope you had a wonderful birthday party. Thank you Ana for Olivia’s beautiful card, and thank you for Owen’s pirate card, it is fab. Thank you to Owain for both Owen and Olivia’s card and little gift, we loved them. Thank you Helen from Cornwall for Owen’s pirate card, it is fabulous. You are very good at drawing, the pirate is amazing. Thank you Hilary and Jen for Owen’s meerkat card, it is lovely. Caitlin and Gracie the dog, the card you made for Owen was just fabulous, it did actually make me cry. I love it. Thank you Chris for Owen’s card, it is lovely. Thank you Mark for Owen’s colourful 9th birthday card, it is fab. Thank you Marty for Owen’s card, too, it is great. Thank you Lyn for Owen’s card it was amazing. Thank you to Bev for both Owen and Olivia’s card and for Owen’s DVD and Olivia’s princess gifts. They’re fab. We also had a lovely letter and picture made by an Albanian girl, and the friendship bracelet is beautiful. The letter is lovely, thank you so much. Extra Smiles team, the glasses are fab and, also, thank you so much for my notepad too. I do get overwhelmed when I receive gifts . A huge thank you. Thank you Jet, Jonathan and Kenny for Owen’s activity book, it is great, and thank you for my letter too.

Sincere apologies if I haven’t posted pictures with both Owen and Olivia with their post.

Update 6th September 2015

Thank you this month to Post Pals, Marty Lonso, Karen, Toni, Connor & Snoopy, Milly & Fly, Kristie, Florence and friends, Tashja & Jasmine, Michelle, Sophie, Dottie, Hillary & Jeni, Emilko, Lyn and Bev, all for Owen and Olivia’s wonderful post and gifts. To Jasmine, pugs are Olivia’s favourite dog. Milly and Fly, that note pad you sent was pawsome, I thought it was you on the front cover! Dottie, Millie & Fly, we always love to hear about your adventures as they are fabulous. Thank you to everyone who sent Olivia birthday cards and presents too as they are all wonderful. Thank you to everyone who has sent Owen birthday cards and little gifts too. We haven’t opened them yet but I will post them all on his Facebook page next week, Owen’s Fund Menkes Awareness. I do apologise if I have missed anyone. Florence and friends, your monthly projects are superb. Olivia’s birthday box was just beautiful and she actually shed a tear.

Owen’s seizures have come back again so there is not much to report really, but we have little smiles come though all the sezuires and spams.

Thank you all for your continued support and thank you Skye for always checking how we are on Facebook as it truly means a lot. You are all amazing and wonderful people.

Update 3rd August 2015

Owen has been out of sorts for sometime now. We have had days where we see smiles though which is good.

Owen’s epilepsy spiralled out of control very quickly and he had a quick change of medication which we are still reducing. We have visited Owen’s many hospitals in the past month, the last one being today at Great Ormond Street. We left there feeling very happy, content and hopeful, as we’re moving in the right direction with Owen’s health now, with his epilepsy currently under control.

Thank you so much to everyone that has sent Owen and Olivia post and gifts – you are truly amazing people.

Thanks again to Florence and friends, your monthly project boxes are just outstanding and Owen’s wall board is fabulous. Skye, thank you again for your continued support via Facebook – although I am never good with words, your support means so much. The vegemite Cadbury bar was actually quite nice when stored in the fridge. Thanks go to Bev too as we had so much fun with Owen’s bath popping fizz stuff. Such a fabulous gift. Thank you Toni, Karen and Connor, for Owen’s cars book. It was so lovely to see Olivia read it to him. I’d also like to say a huge thank you for the quilt that was sent for Owen this month as it is perfect. Claire and Michelle sent lovely cards this month to Owen, as did Mark to Olivia. We got to share in Dottie’s adventures, as well as Milly and Fly’s sending a ‘pawsome’ card from France. Olivia received some brilliant gifts too this month and says thank you. She also wants Hannah to know she hasn’t forgotten to write and will soon.

Update 4th July 2015

Owen hasn’t been too bad this last month – his seizures have been unpredictable with this hot weather, but he is doing okay.

I would like to say a massive thank you to everyone at We Love Paper Cuts, the frames you sent us all were just amazing and overwhelmed was truly an understatement. You guys are just amazing and there were many happy tears!

Thank you so much to Florence and friends for Olivia’s (always amazing) monthly projects and I can’t express how grateful I am that you sent Owen a gift pack too. The books are just fab and Owen loves them, so we had plenty of chuckles with the books. I was actually quite tearful with his gift. Florence and friends, you are just fabulous people and Olivia loves receiving your projects.

Thank you Toni and Connor for Owen’s Bug’s Life DVD, he has watched it a good few times. It is double sided too and I think it has different endings. Again, you are also fab and sending Connor big hugs.

Dottie, we absolutely love your adventures and I must say that your colouring skills are just fabulous.

Hi Hannah, thank you for your letters and cards. Sorry we haven’t written back yet, but I promise Olivia will sent to a letter really soon.

Thank you Anl for both Owen and Olivia’s handmade cards, they are fantastic.

Thank you Kat for your lovely postcard from south Cornwall. Hopefully one day we will take Owen to Cornwall so he can have a taste of Cornish icecream.

Thank you Skye for your regular contact via Facebook, it truly means a lot.

Again, I would just like to say thank you to all you amazing people as you really make us smile.

If you would like us to reply to you could you please forward your address/email so we can send a thank you.

Update 31st May 2015

Owen’s health is still very much up and down. We did have a good few weeks of a happy seizure free boy, but we are back to increased seizures again.

Thank you so much Millie and Fly for your pawsome card and letter. Always such a pleasure to hear about your adventures. Notes from Dottie always make us smile. You really do some awesome stuff. Thank you Becky Rideout for Owen’s card and ice-cream bubbles, the bubbles are just fab. Olivia is always blowing them for Owen. We love minions, we can’t wait for the movie to come out. Thank you to the Dreter family for Owen’s card, the teddies card is cute. Hi Hannah, Olivia just received your card this morning and I am so pleased you received Olivia’s letter. Thank you Florence and friends for your monthly project which is always fabulous. Olivia absolutely loves it all. The bee and wind chime are on Owen and Olivia’s cabin and they look awesome. I simply can’t thank you all enough.

Update 1st May 2015

Thank you so much for both Owen and Olivia’s gifts this month. Florence and friends, your monthly projects are wonderful and very much appreciated. Olivia has become quite taken with bath bombs. We are still enjoying the Beatrix Potter book and flopsy bunny from the last monthly project.

The senses box this month was just amazing. I know I always mention this but I would like to thank Skye for being such a fantastic support on my personal Facebook, your handmade sun catcher is just beautiful and we love the funky balloons you send too. The sound cards are fab. I haven’t really been around much on my personal Facebook as Owen’s health has been so unpredictable, but I have managed to get Owen back on track and back to being his happy verbal self. Milly and fly, we do follow your Facebook and your letters etc. are always fabulous and it really does make us all smile. Thank you also to Hannah for being Olivia’s Post Pal, as Owen’s health has stabilised I can help her write you a letter, I can only apologise it has taken so long. Lindsay, thank you so much for both Owen and Olivia’s card, the jokes are just brilliant. Thank you Toni and Connor for Owen’s fabulous gifts, the lip butter smells lush, Owen was really enjoying the smell and taste today, he also loves his spot the dog and he wouldn’t let him go.

Thank you all for everything, it truly means a lot. Many thanks.

Update 4th April 2015

Owen’s health is been so up and down at the moment, but now we are in spring the winter bugs will leave him alone so he can be the Mr Chuckles that he is. We have just started Owen on a blenderized diet and we are just taking things slowly with it as we don’t know what Owen’s weight will do (either lose or gain too much weight).

I would like say a huge thank you to everyone who has sent cards and posts cards. I have tried to upload as much as I can on Owen’s Fund Menkes Awareness page. It truly means a lot to see Owen and Olivia smile when they receive post.

I would like to take this opportunity to say thank you to everyone who has written small notes to Owen and a huge thank you to Hannah for wanting to be Olivia’s pen pal, she is truly over the moon that she has a friend called Hannah and she tells all her friends that she has you as a pen pal. Owen was been so unpredictable with his health lately which has delayed Olivia writing back.

Thank you so much to everyone who sent gifts to both Owen and Olivia. A huge huge thank you to the extra smiles team at Post Pals, I can’t tell you how much the bath bombs were appreciated. Olivia said they really do make her feel like a princess and they were just so beautiful. Owen’s colour fizz are awesome too. And thank you for the awesome Easter egg too, we have just started Owen on a blenderized diet so a nice chocolate smoothie will be made with it and Olivia will also enjoy some. Florence and friends, we are so overwhelmed by that beautiful box you make for Olivia. The box itself was fantastic and thank you for all the gifts inside too, she absolutely loves everything. Thank you Toni, Karen and Conner, for Owen’s superworm book, we love Julia Donaldson books. Superworm is a fantastic book and Owen absolutely loves it. Thank you so much everyone.

I would like to say a huge thank you to everyone for your post, letters etc. I would like to say thank you to Bev too for sending me a card just to make me smile, it really did make me smile and it is nice to know you see Owen on his Facebook page. And a huge thank you to Skye for always checking on Owen, Olivia and myself. It is always a pleasure to hear from you. A big thank you to Milly and Fly as well as you always send Owen well wishes on Owen’s fund.

Update 4th March 2015

Thank you so much to everyone who sent gifts to both Owen and Olivia. The Minion top is awesome and Olivia’s box of sunshine was just fantastic. All the gifts are just wonderful. Thank you for absolutely everything.

I would like to take this opportunity to apologise if I haven’t posted much with cards, gifts etc. We have all been a bit up and down with winter bugs. Owen has been very up and down lately but he is managing to stay out of hospital. Thank you again, you are all such wonderful people.

Update 3rd Febrary 2015

I would like to say a huge thank you to everyone at Post Pals. The balloons that were sent are fab! Thank you for the wonderful cards, books and stickers too as we really do enjoy them.

Update 11th January 2015

Owen is going through a really good spell and the moment which is so great to see.

A huge thank you to all you amazing, wonderful and beautiful people for making us all feel really special during the festive season.

Thank you so much to all the wonderful elves, reindeer and Mrs Claus for the cards and letters from the North Pole. Olivia firmly believed all post was delivered via the North Pole Express and it was magical.

We have had a very happy and healthy month, normally Christmas is spent with Owen being poorly or just simply not himself but this year he was absolutely loving it. Owen absolutely loved listening to the Roald Dahl The Twits audiobook which sent him in to big chuckles and it was great to see. I was so emotional when we opened that and I can’t thank you enough. We also had fun making gingerbread, the house smelt wonderful and festive.

You all made us feel really special this Christmas, thank you all so much for everything.

Update 29th November 2014

Owen has been very up and down the past few months with bad seizures, sickness, more viruses, urine infection and now tonsillitis. This month has really took its toll on him. However, it was great to hear from school that Owen is using the eye gaze machine to make selective choices, which he is doing remarkably well with when he is in good health. He is making a lot of finger and pointing movements for choices too.

Thank you Milly and Fly for your postcards and letters, we like seeing your adventures, especially Olivia as she is dog mad. Thank you to April and the voluntary actia centre for your beautiful Christmas card. Your words did make me cry. Thank you Bailey and Lola for your Christmas cards, one arrived today for Olivia and Owen’s arrived yesterday. You are very cute. Thank you Skye for your little cards and notes for both Owen and Olivia. Thank you Susan Martin for Owen’s hugs card wishing him to get well soon, his card is lovely. Thank you Melissa for Olivia’s beautiful blingy card, we both absolutely love it. Thank you Dottie for your wonderful news letter, the steam train looked so much fun. Thank you Prancer for your Christmas letter that arrived with Owen and Olivia’s parcel yesterday. Thank you so much to Skye for all your wonderful gifts, we are having so much fun with the card reader. Susan Martin, I simply can’t thank you and Melissa enough with your awesome Mr men books for Owen and arts and crafts packs for Olivia. Olivia said you are amazing Melissa, amazing and thoughtful were her words. Toni, Connor, Karen and Snoopy, a big thanks as Owen absolutely loves the Nemo. A huge thank you for the parcel that we received yesterday from Prancer aka Kim Lawrence, we can’t wait to start the advent calendar.

I would like this opportunity to say thank you to Skye for her constant contact via Facebook to see how Owen and Olivia are doing, especially Owen as he has been poorly on and off now since the end of August. Thank you to Milly and Fly for checking on Owen on his Facebook page, Owen’s fund menkes awareness, please feel free to continue to post on his wall as all Facebook posts and messages are read to him. Again, I simply can’t thank Susan Martin enough, if you see what she does with the books she gives to Owen it just amazing. She makes his books all sensory, touch and feel, and sparkling – we absolutely love them. Owen’s face – well, there are just no words really – his face says it all, he loves them. Melissa always jazzes up Olivia’s package, it is always very bling. We absolutely love it. Thank you Toni and Karen, you guys are also amazing.

Update 29th October 2014

I simply can’t thank everyone at Post Pals enough. We are still having issues with Owen and his seizures and his post makes him smile. Thank you to everyone for the wonderful cards, we absolutely love them and a huge thank you for all Owen and Olivia’s gifts. The Mr Men books are always amazing from Susan Martin. Owen received a dvd from Toni, Connor and Karen, and it has been in his DVD player and watched ten times already. Olivia received the most beautiful tiara and we adore it, so a massive thank you to the sender as it is beautiful.

Update 9th October 2014

I simply can’t thank everyone at Post Pals enough. We have had a tough month with Owen and his seizures so I haven’t posted much regarding Owen and his post. I like to post happy pictures of Owen with his mail on Facebook.

Thank you to everyone who sent Owen birthday cards and thank you for the cards and post cards for both Owen and Olivia. They all put a smile on all of our faces. A huge thank you for all Owen’s birthday presents and for the gifts for both Owen and Olivia, they are truly amazing.

Update 30th August 2014

Owen has had a busy month with various tests and we also had our annual appointment at Great Ormond Street Hospital. He was becoming so lethargic and sparking seizures that we thought it was time he needed a transfusion. Test showed Owen’s potassium levels are low and his clotting is also abnormal. Despite then having potassium supplements his repeats tests showed his potassium was still low and his clotting levels were worse than the previous readings. However he is now feeling better and is ready to return to school next week.

I would like to say thank you to you all at Post Pals. Everything you do it truly amazing. The Mr Men books we received from Susan Martin are just amazing – they even make me smile, let alone Owen. The indoor beach was superb. We have had plenty of fun with that. All the gifts are amazing. Thank you so much for Owen’s letters and cards too as we really enjoy hearing from you. Olivia really enjoys her post too, especially the pick up sticks, stickers and tattoos. A huge thank you for her birthday cards and gifts too.

Update 22nd July 2014

Thank you so much for the cards and postcards for Owen and Olivia. They really do enjoy getting post from you all. Thank you for all for your wonderful letters too as we take great pleasure in reading them. Again, a huge thank you for all the gifts. The Mr Men books are brilliant and Owen adored his balloon.

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