Chanel’s brother has severe nut allergies, please do not send any products containing nuts to this family

Story Written 2018

Chanel was diagnosed antenatally with a rare congenital heart defect know as Hypoplastic Left Heart Syndrome with an Intact Atrial Septum – basically half a heart. She has required four open heart surgeries, the first being immediately at birth (The Worlds Youngest Ever Open Heart Surgery Patient), making medical history and paving the way for others born like her. Her most recent was August 2017 when she was 3 and half years old and was also the hardest physically and mentally for Chanel (The first Fontan on a HLHS/IAS in the UK).

Chanel has and continues to go through a lot in her life – she has been tube fed since birth, had a major stroke at 2 weeks old resulting in weakness to her whole left side and cerebral palsy (but learnt to walk at 2 and half years old with the help of a leg splint), had 24 operations and procedures in total, including 4 major open heart surgeries, but is the happiest, kindest, most beautiful little girl ever, always thinking of others. She is utterly inspiring and teaches everyone around her to always have hope. When Chanel deteriorates again she will need a heart transplant, but we take each day as it comes and have every faith that Chanel will deal with anything that may come her way with the same fight and determination she always has.

Chanel loves all things Disney, especially Mickey and Minnie Mouse and Princesses. She truly believes she is a real Disney Princess just like any little girl should. He favourite is Rapunzel. Chanel also loves Peppa Pig, taking photos, and board games with her two brothers.

Update 2nd December 2019

Chanel has struggled since the beginning of winter, with lots of bugs going around and she takes longer to get better than most but we have thankfully avoided hospital. She had her cardiac review and got another few months ok! She is so excited for Christmas now.

Update 1st September 2019

As of a few days ago and after being tube fed 5 1/2 years (since birth) she is now feeding tube free.

Update 21st August 2019

Apart from her new diagnosis of Epilepsy in January there has been no change health- wise, she has her 6 month check up October/November time.

Story written 2018

Before Evia’s second birthday we noticed she had started to lose her sight. We were back and forth to the hospital where Evia had numerous tests and scans. Evia was transferred to another hospital where they fitted her with a port and started to administer IV chemo. After 18 months of chemo which made Evia sick and lose her hair, she then had 9 months off. They removed her port but at her next scan they had to put the port back in and re-started chemo, which she now has weekly.

Evia had a second round of chemo which lasted for a year. She finished this at the end of January. Evia now has to have regular scans and at the moment she still has her port. Evia has NF1 which caused her to go blind but she refuses to let this stop her.

Update 28th February 2024

We would like to thank everybody for all our post recently all is very much appreciated.

Evia’s last MRI scan before Christmas came back all clear so all good news.

She is excited and nervous about starting secondary school this year. Am sure this will bring Evia lots of challenges but am sure she is up for the challenge and it will probably scare mum and dad more!

She has recently finished her first job role of being the Junior Civic Mayor of Doncaster where she got to go to lots of events including, her favourite, meeting our new King and Queen and being able to do a speech for them.

Evia interests are: she loves James Arthur, and she does like any kind of music, Harry Potter, Squishmallow toys, Tonie figures and fidgets. She loves anything girlie especially nail vanish and body sprays.

Elliott update.

Once again, thank you all so much for everything you do.

Update 4th October 2022

We would like to thank everyone for the post we have received.

Thank you to everyone that shared the social media post about Evia’s wish to meet James Arthur. She loved meeting him and listening to his concert, she has since been to another one of his concerts. 

Evia has an MRI scan booked for October. This is the first time she is going to try it being awake, we don’t  know how she will manage to keep still as she is a wiggler and likes to talk. She is going to listen to her favourite singers. Hopefully she will  manage it, if not they can rebook it. 

Evia and Elliott have both settled back into school well.

Update March 2022

Evia would like to say thank for her recent post especially her birthday cards we keep them all in a box and she goes through them every day.

Evia has been very well, at the minute everything is stable she will have another MRI scan later in the year to see how things are going.

She has recently started at Cubs which she loves, she went on her first ever sleepover away from Mum and Dad at camp. Her brother was there so am sure they both looked after each other.

Update 21st June 2021

All stable at the minute, no changes.

Update 8th April 2021

Evia would like to say thank you for all her birthday cards and gifts, she really enjoys the letters and listening to what people have been doing.

They both really enjoyed the Easter Zoom party.

Update 8th February 2021

We would like the thank everyone for both Evia and Elliott’s Christmas gifts and cards, they’ve loved every single one, putting each Christmas card up in their bedroom.

Healthwise  Evia is doing well, stable at the minute.

Update 12th July 2020

Nothing much has really changed health wise we are still waiting for Evia’s next MRI date to come through. Due to the virus it has been delayed, she was due in February time, so hopefully it will be soon.  We did manage to move house around 3 weeks ago, which is loads better, as we now have a bigger garden, which has helped loads. 

Update 22nd April 2020

Evia and Elliott would like to thank everyone for their letters and gifts they have received. Evia has kept all her birthday cards she going to put them up in her bedroom when we move as lots of them are tactile. We were due to move house before the lockdown started which has been put on hold for now. 

Evia health wise she has now had her port took out which am so pleased happened before all this virus started. She was due a MRI scan in February, we are waiting for an appointment hopefully be soon. She is getting really good at her braille and now she teaches me.  

Update 9th September 2019

Evia and Elliott would like to thank everyone for the cards and parcels they have been receiving. They really enjoyed the post pals party, it was great to meet some other post pals families and everyone involved with post pals. 

Evia has just started year 2 and is settling in well. She has recently had a MRI scan which showed everything had stayed the same, which is good news. We are currently waiting for an appointment to remove her port which will hopefully be soon, she will then have a MRI every 6 months unless something changes or we are worried. 

Evia’s brother Elliott has just started reception, we have had a few tears at drop off, but I am sure it won’t last long, he enjoys it once he goes in.

Update 16th June 2019

We would like to say thank you for both Evia and Elliott’s monthly parcels and their fortnightly letters and everyone else who sends post. 

Evia had one hospital trip this month for her ears. We were getting them checked and they needed cleaning out but she became a little anxious and wouldn’t keep still, so we had to have a trip to theatre to go to sleep so they could be cleaned. They had a good look at the left ear that was causing her problems but they said it all looked ok. So hopefully at her next scan which is in July, all should be clear and if the tumour has stayed stable we should be hopefully getting her port out soon. 

Thank you once again, hopefully see lots of you at the party.

Update 28th March 2019

Evia and Elliott would like to thank everyone for their cards and gifts they have been sent. Evia received loads of cards for her birthday which she loved, she still plays with them now asking me who they are from. 

Evia has recently just had a MRI scan,  at which they  said the optic gilomar has stayed the same as last time, which is good news. They did find something on her left ear which is new, they are not too concerned about it at the minute, but want to re-scan her in 3 months. Then she may have to have a operation on it, so they have decided to keep her port in for a while longer, we were hoping it would come out this time. 

Update 28th January 2019

All of us would like to thank you for all the Christmas cards and gifts we have received. We have had lots of fun opening them all. 

Evia is doing well at the minute. She had another ear test which they said has improved since last time. She has a MRI scan due in March – hopefully all will be ok and we can then talk about having her port removed soon.  

Update 18th September 2018

Evia would like to thank everyone that has sent her letters and gifts, she loves feeling them all and listening to us read them to her. We will keep them all in her craft book. She can now remember what some of the letters and cards say and who they are from.

She recently had a MRI scan which was good news, they said her tumour is stable but they are keeping her port in at the minute just in case, as they took it out too early last time and she needed it put back in.

We have since learned that the tumour has damaged the nerve which tells her when she is full and this explains her obsession with food. She has just got a trike so we are hoping this will help with the exercise.

She recently had her ears tested they are concerned with her left ear, so may need grommets or a hearing aid in the future.

Any food sent to siblings must be halal and suitable for vegetarians.

Anoosha is a 4 year old full of life. She was 11 days old when she was diagnosed with a heart condition (TOF). By the age of 4 months she had her 3^rd open heart surgery. When she was 4 months old her bowel twisted and she needed emergency surgery called a Ladd’s procedure. At the age of 1 she started breaking her bones  just by us picking her up and was diagnosed with Rickets. Since the age of 1 she has been completely TPN (IV feeding) dependent for 24 hours a day. All her medication has to be given by IV straight into her heart.

When she was 3 she had a cardiac arrest and ended up in intensive care for three weeks. She now has a loop recorder fitted in her heart to monitor her heart rate. She has had about 5 intensive care visits due to arrests or line infections.

She has a gastrostomy on free drainage and a disconnected stoma. She is due to have her colon out in the next few weeks.

Anoosha has been in hospital for a long time.

Update 22nd December 2022

Today our princess Anoosha lost her long 9 year battle. She has returned to the Lord. Anoosha was the sassiest, bravest little girl I had ever met. She fought through every setback like a soldier. She brought joy to so many lives.

Update 4th October 2022

Anoosha remains in hospital. She has been bouncing in and out of PICU, HDU and onto the main ward. 

Update 24th March 2022

Anoosha is 8 months post bowel transplant and is still in the hospital. We have different hurdles to get over but we are getting there.

Anoosha remains her smiley, cheeky self and is thriving.

She currently has a separate peg for free drainage and a Jej for feeds. She still has her central line and is on fluids overnight. Her stoma was not able to be reversed and we never got a large bowel transplant.

This child amazes me every day with her strength and courage. Even when in pain she smiled through it.

Next step is hopefully to get her walking after they do her Achilles surgery but fingers crossed home before that.

Update 4th June 2021

First of all I want to say a massive thank you to Anoosha’s donor family where ever they may be. Your selfless act has given my princess a chance to live. So much love to you guys.

I am so proud to be Anooshas mum, this girl is seriously something else. She never fails to make me smile.

A huge thank you to my husband and kids. We had no choice in this but you kept us going. 7 years we have been split as a family and our bond is stronger than ever. 

Update 2nd June 2021

She finally came out of theatre at about 4.30am and she’s in intensive care. The surgeon said they were only able to get a small bowel and a partial stomach in as there wasn’t any room. Her abdomen has been left open for now.

Update 2nd June 2021

So today Anoosha got her transplant call. Anoosha is currently sitting in her gown waiting to go down (should go by 7ish) Can everyone please pray the transplant goes smoothly. I don’t even know where I’m suppose to be and only one parent is allowed. 

Update 21st August 2020

Anoosha has been in hospital for the past 5 years with most of it in Great Ormond Street Hospital.  We are current on our 8th month in GOSH. All she craves for is a quality of life with her family. Anoosha is constantly septic, which weakens her completely and puts her back. 

Update 1st October 2019

Currently still active on the transplant list. We have been an inpatient in our local hospital since April awaiting nurses for home. Infection in the line is still a battle and she is always on antibiotics.
She is a very happy little 5 year old who loves life. Whilst an inpatient she is able to go to our local hospice for 2 mornings a week.
She is becoming more aware of her problems now and she questions why she is always in hospital and why she can’t eat!
She always looks forward to receiving mail and opening presents.

Update 3rd April 2019

Anoosha has now been active on the transplant list for six months. She’s awaiting small & large bowel, liver, stomach and pancreas. She’s been an inpatient at Great Ormond Street Hospital for 2 years now. She is constantly fighting sepsis (almost every 2-3 weeks).

She is waiting to start immunoglobulin treatment.

I want to thank everyone who is sending mail out. We just need the transplant call to come quick.

Our beautiful daughter, Isla, was diagnosed with a Wilms’ tumour on her seventh birthday. Our journey began in April this year when Isla had blood in her urine. She was prescribed antibiotics but they didn’t work. Following lots of different tests, where the results kept coming back as normal.

After we discovered a swelling on her left side she was sent to the hospital for an ultrasound and MRI and was diagnosed with a Wilms tumour in her kidney.

Since then Isla has had four weeks of chemotherapy and she’s due to have her kidney removed on 22^ndof May. The stage of her cancer is still unknown, so we don’t know how many more weeks of treatment she’s going to have.

She was so healthy until now and we didn’t have any idea that the cancer had been growing slowly for all this time. She is now feeling the side effects of chemo and the last month has been extremely difficult for Isla and it’s going to be a long journey for her.

Isla’s sister Enya was also a member of Post Pals and underwent chemotherapy for a different condition.

Update 6th August 2019

Isla has now finished her chemotherapy and has had her Hickman line removed. Her recent MRI scan has come back looking clear. Obviously she will be having very regular scans and check ups with oncology. We are hoping she recovers from the prolonged treatment but I know psychologically this will take a long time. Hopefully her hair will start to grow back now and she can begin to enjoy normal childhood activities. We have recently been swimming for the first time in 17 months, it was lovely to hear Isla giggle. Hopefully we can enjoy a family holiday this summer and get the recovery we all need. We can’t thank post pals enough for helping us through some very dark and difficult times. 

Update 10th February 2019

Isla has now completed the 27 weeks post-op chemotherapy and moving on to maintenance which is once a month. She has been so poorly with the side effects of the medication and we have to stay in hospital each treatment to manage her sickness.  She is still struggling psychologically with her Hickman line, but we are looking forward to having a bit of a break between treatments with just nurse visits weekly for line flushing and dressing changes. Just trying to keep her as healthy as possible as there are so many germs around this time of year. She could end up in hospital with just a cold, her immune system is not as good as other children’s due to the chemotherapy. 

Update 19th October 2018

Isla had her left kidney successfully removed along with the tumour in May and is now 20 weeks into an intensive chemo regime. It was found she has nephroblasmatosis in the other kidney that needs treatment or another tumour could grow.  The chemo drugs she is given make her really poorly and we are yet to find any drugs that help with the sickness. Due to this she has developed some huge psychological issues relating to her Hickman line and vomits every time it is accessed or chemo is spoken about. Isla has lost a lot of confidence and trust. She is having a really hard time at the moment.

Story Written 2018

Theo was born at 29 weeks, and was diagnosed very early on with cerebral palsy, epilepsy and feeding problems among other complex medical needs. Since then he has also been registered blind.

“There are many words to describe Theo. Beautiful, special, cheeky but probably the most fitting word is a ‘fighter’,” explains Denise, Theo’s mum.

Theo has bravely endured 31 surgical procedures in his short life, and also survived viral and bacterial meningitis. He is fed directly into his bowel hourly and continuously through the night by a machine, so requires around the clock care.

“Theo never ceases to amaze me; he inspires me and is a really super son. Everyone who knows Theo will agree no matter how poorly he is, he never refuses to smile.” said Denise.

Theo has now been moved to Bluebell Wood Hospice and is receiving end of life care.

Update 1st of June 2018

Theo passed away this morning.

Update 17th May 2018

Oh my goodness I sat and sobbed today when the nurses brought the post down!! Thank you so so much for all the wonderful presents and cards ! We read them all to Theo . You are all so generous.

Story Written 2018

Finley was diagnosed on 1st March 2016, aged 6 years, with anaplastic large cell lymphoma (ALCL) a rare type of non-Hodgkin lymphoma (NHL). Like all lymphomas, it’s a cancer of the lymphatic system, which is part of the body’s immune system.
A programme was immediately put into place and Finley started intense chemotherapy which lasted for six months. Finley responded really well to treatment and he rang the End of Treatment Bell on 11th August 2016 and was in remission for 15 months with bi-monthly visits back to the hospital for check ups.
On 11th October 2017 it was sadly confirmed that Finley had relapsed and the cancer was back. This time his treatment programme will continue for two years with chemotherapy treatment once a week. You can follow Finley’s Journey here, we will be posting regular updates of his treatments and what he is getting up to as a normal everyday 7 year old boy!

Update 25th June 2022

As Finley is doing so well we think it’s times for him to move on. We just want to say a MASSIVE THANK YOU from the bottom of our hearts, to each and every one of you for all of Finleys wonderful post and for supporting him through his journey these last few year. It has meant so much to us and Finley. It has helped put a smile on his face even in the darkest days of his journey. Great memories made that we will cherish for ever.

Thank you so much Post Pals you’re amazing 

Update 11th November 2021

Finley is doing well, he started secondary school in September and is enjoying it. He also got his yellow belt in Karate last month. This is really good for him to help build his strength in his muscles and also help build his confidence. He also had MRI scan last month which was clear with no evidence of disease. Legs and feet are still a struggle and still causes him pain and discomfort, he had new in soles made last week to see if that helps. The last ones made no difference so fingers crossed these will help. He has physiotherapy every 4 weeks with home exercise too.

Thank you all so much for your lovely post and continued support, it really is appreciated and it really does make Finley happy 🙂

Update 20th June 2021

Finley is doing well, he is back at school and enjoying time with his friends. His last MRI was clear with no unexpected lumps or bumps, he has another one next month and they will continue with every 3 month MRI and reviews. Finley does find them really hard to do as they are an hour long, he does get quite anxious about these, but this is the best way to check him over and make sure nothing is missed out. 

His feet still cause him problems which holds him back. He is now back having physiotherapy and also has special insoles for his shoes to help him walk with more comfort. 

Finley has recently started karate to help build his strength up. He finds it tough but he is really enjoying it. 

Thank you to everyone that has sent Finley post and has kept his spirit up.

Update 30th August 2020

Finley has been doing really well lately, we haven’t had any unexpected hospital stays since June. He was admitted for 4 days with severe tonsillitis again. His feet are still a big problem, they cause him a lot of pain when out and is stopping him from doing activities. He has been given exercises to do at home to try and help. His anxiety did get a lot better during lockdown, but know things are changing he’s starting to feel very anxious and upset. We are working on this too with his therapist. 

His is due a MRI this months to make sure there is NED and then he will have a follow up appointment with his consultant for a review. 

Thank you for all the lovely post it really has put smiles on his face, we are so grateful to all of you. 

Update 17th May 2020

Finley was due to finish treatment on the 6th November 2019, after another long 2 years of treatment, but sadly treatment lasted a bit longer than expected, because Finley’s end of treatment scan was showing something on his chest. His consultant thought the cancer was back and put him straight back onto weekly chemotherapy. This was a terrible time for Finley and his anxiety went through the roof. He had further scans but the only way to confirm if it was disease was to do a biopsy. This was going to be tricky as it was right behind the chest bone, but surgery went well.

On Christmas Eve we had the best news that the biopsy was negative and Finley could stop treatment. Finley rang the End Of Treatment Bell on 24th January 2020.

It has been one hell of a rollercoaster these last 4 years with many struggles throughout, but Finley has been AMAZING as always. He will be kept a close eye on with 2-3 monthly MRI scans and check-ups. His energy levels are slowly increasing, his immune system is low, but will build up to normal again over the next 6 months. He is really suffering with anxiety too, but we are working on that. The strength in his legs and feet are still very weak, not sure how much damage has been done yet, only time will tell. Finley has full body MRI scan due end of May, so we have everything crossed for that.

He is coping ok with lockdown, keeping busy playing games, baking, making Tik Toks, movie nights and playing his X box

Thank you to everyone that has sent post it really does make a difference and brings smiles and happiness to Finley, it really is appreciated ❤️

You can follow Finley on Facebook and see what he’s  been getting up to @ Finleys Journey

Update 13th November 2019

We are now on week 100 of treatment and have recently changed from weekly chemotherapy to fortnightly. This has made such a difference to Finley, he is doing great, his levels are good and we haven’t had any unexpected hospital stays for a while.

 Finley is going to school most days as much as he can, he does get tired, so we take it day by day. He is enjoying going to school and being with friends and learning new topics, he loves history. 

 He has also gone up a stage in his swimming lesson and got his 25 metre badge. 

His feet are still a big problem for him and they do hold him back from doing things, which does get him down when he can’t keep up with friends or walk very far. This is one of the many side effects of the type of chemotherapy Finley has. 

Thank you to everyone that has sent post, Finley really enjoys getting it, it really does bring BIG smiles to his face, it’s very much appreciated. 

You can follow Finley on Facebook and see what he’s  been getting up to @ Finleys Journey 

Update 4th March 2019

Finley has been doing well lately. He hasn’t had any unexpected hospital stays since November but is still going to hospital once a week for his weekly chemotherapy. He is now on week 70 of weekly Vinblastine. Finley has grown a bit over the last few months and has put on a little weight which is brilliant, but this meant his chemo needed to increase too. The first few weeks were tough for him, the increase made him more tired and it really effected the muscle in his legs and feet again, which was very painful for him to walk and be active. Also his liver did not like the increase, his ALT went up so we had to keep a closer eye on that and increase Finley’s water intake to 2 litres a day which is really helping and his ALT has gone down.

Finley is going to school most days at the moment. He isn’t doing full days but he goes and does the best he can which is fantastic. He has also recently started back at swimming lessons once a week to build up the muscles in his legs, he absolutely loves it. He can’t wait to start riding his bike again too.

Thank you so much to everyone that has sent post. Finley really enjoys getting it and it puts a massive smile on his face, which puts a smile on our face. It is very much appreciated by us all.

Update 22nd July 2018

Since Finley had his line removed and changed to a port he hasn’t had any infections, which is great. Finley has had a few hospital stays due to having tonsillitis twice in one month and needed IV antibiotics to get rid of it.

Finley’s treatment is going well, but one of the many side effects from the chemotherapy he is on, effects his nerves and muscles in his hands, feet and legs. This is very painful for Finley and he finds it difficult to walk some days. His chemo dose was reduced for a few weeks to try and give him a break, which did help and was a much needed break for him after 6 months of continuous weekly chemo. He is now back up to full dose chemo and is having physiotherapy to help strengthen his muscles.

Finley has been popping in and out of school when he feels up to it, which he has really enjoyed seeing his friends.

Thank you to everyone that has sent post, it really brightens up Finley’s day and puts a big smile on his face. It is all very much appreciated.

Update 6th March 2018

Finley has been staying in hospital more than expected the last few months, as he kept spiking temperatures and was unwell with infections in his central line. His consultants made the decision early February to have surgery and remove his central line and give him a 2 week break before putting in a new one. Finley now has a new line,but this time he has gone for the Port. Since this has been done Finley has been feeling a lot better and has a bit more energy.
Finley is still not back to school,but hoping he will be able to go back half days in the next few weeks.
Finley is currently having home schooling when he doesn’t have to be at hospital,which he is enjoying.

Elle has cystic fibrosis and had a lung transplant in early 2017.

Her news lungs are beautiful and working perfectly, the nasty bacteria that was in her old lungs though managed to find a way back into her body and in November we were told we are running out of treatment options.

Seven months post-transplant we discovered the bacteria had started to grow in her ribs and sternum. Elle had surgery in September to remove the affected area. She was blasted with the highest dose of antibiotics and this meant serious side effects.

Elle is almost completely deaf now and her hearing won’t ever return. She has lost most of her hair apart from a little patch she’s holding onto dearly. Her nausea can be relentless, she can’t eat or keep anything down and consequently she is malnourished and her poor little body is very frail.

Four weeks after the surgery to remove this infected area an MRI scan told us the bacteria is still present and is growing, Elle’s body can’t fight it.

We were preparing to receive the news from Great Ormond Street that we have no other choice but to keep her comfortable and make the most of what short time is left but Elle’s consultants have been discussing her case all over the world to try and find a way forward, and recently we were thrown a lifeline: they have agreed to operate on her one last time. The GOSH team, Elle and her family are going to give it everything they’ve got.

It’s going to be an intrusive surgery, removing more bone and infected tissue, and this time potentially leaving the wound open to heal from the inside. A significant stay in intensive care and many more weeks in GOSH. A super blast of medication to give her body all the help we can to be sure it goes and doesn’t return.

This is our only option left to try and save her.

Elle knows the bug is back, she pictures it as ‘little faces eating away at me’ and she wants it gone. She wants to beat the bug! And most importantly, she wants to go ahead with the surgery, Elle has plenty of fight left in her.

Her biggest upset on hearing this news was the realisation that she would be in hospital over Christmas.

3rd January 2018

We are very sad to say Elle passed away peacefully in her parents’ arms.

Please keep sending cheerful post to her sister Cara.

MATILDA HAS A LIFE THREATENING ALLERGY TO LATEX. Please don’t send items containing latex to Matilda or her siblings. Matilda is also unable to eat but is happy for her siblings to receive sweets.

Matilda has many life threatening/life limiting conditions which have kept her in and out of hospital all her life.

She has spent months upon months at a time in hospital and despite being away from her siblings and Daddy for long periods, she never complains and always has the biggest smile on her face.

Matilda has intestinal failure; no swallow so cannot eat or drink and therefore needs TPN to keep her alive and well. Because Matilda has ketotic hypoglycaemia she cannot control her blood sugars and they drop dangerously low even after a few minutes of stopping her TPN, so she has to have IV glucose running 24/7 too.

Matilda is completely paralysed from the chest down, so she is a full-time wheelchair user.

Matilda sees herself as any other little girl and although she knows her body doesn’t work as it should or like most other children’s she has a real zest for life and never lets her disabilities stop her from achieving what she wants to do.

Matilda attends our local children’s hospice which she loves to go to as there is so much to do there and she gets spoilt rotten.

Matilda cannot go to school due to medical reasons and her being unpredictable and unstable medically so she is home educated by Mummy.

Sadly in August Matilda’s sister Daisy passed away so its been a very tough year.

Update 24th August 2020

Sorry for the lack of updates, it’s been a very strange year this year so far and what I had hoped to update has not happened yet due to Covid 19 abruptly putting a stop to our plans.

Matilda has had a very stable few months, a few hospital admissions for surgery and routine weekly injections, infusions and bloods but we have mainly tried our best to keep her well and away from hospital as we like many others have been shielding.

We were due to go to the US this spring for major spinal surgery that we have been refused in the UK, however it has had to be postponed due to Covid. We have no idea when this will take place now, it isn’t safe enough yet for us to travel to the US nor it is safe or practical for us to be in the hospital with her for such a long period.

In my last update I briefly explained we were going for assessments abroad to see if they will privately offer her the surgery she desperately needs to improve her prognosis and prolong her life.

Those assessments were very helpful but they also told us things we did not know. As part of the assessments Matilda saw consultants from every speciality and we found out so much more about her.

The biggest shock was when she saw respiratory and pulmonary who did every test under the sun, her lung function is only 41% and her lung volume is less that 50% and she was given a diagnosis of severe restrictive lung disease. This is a great worry not only because her lungs are struggling due to her unique abnormal collapsed spine but the major surgery will affect her lungs badly and the doctors are worried about her initial recovery post surgery and the fact her lungs may not cope well.

The reason Matilda needs this surgery is because her organs are massively squashed and because she doesn’t have a belly ( she is all ribs) her organs push upwards into her chest stopping her lungs growing and working properly instead of being able to grow outwards into a belly.

Thankfully the US hospital said she was a candidate for the surgery and the feel they can improve her quality of life, her prognosis and more importantly give her lungs some room.

Without going into too much detail she will need two major surgeries  to get done what they need to do and we will have to stay in the US for 4-6 months.

This will not be easy for us, but we have no other choice as our case went to an Ethical Panel in England and the surgery was refused based on no experience here and the surgery deemed experimental with a high mortality rate given all her co- morbidities.

Thankfully in the US Children’s hospital they have greater experience of this time of abnormality and much more experience, they are confident the can help her and most importantly they want to help her and not just leave her to deteriorate and impose palliative care which is what they wanted.

As we are all trying to get back to some normality whilst Covid is still around we have been told by Matilda’s consultants that given her respiratory problems and everything else we should continue to shield as a family for the foreseeable future and that means the children not going to school. 

We have weighed everything up and given how vulnerable she is and the impending surgery we cannot risk her getting very ill with Covid so we are going to home school them all for now and see how things go with regards to cases of Covid and what autumn/ winter brings. We live in a restricted area and we have higher cases that most areas so right now I am happy to home school the kids and I feel that is best for my family.

The kids loved home schooling before the summer holidays, they have progressed so much and don’t seem bothered at all that they are not going back just yet so I’m happier about that as it would be harder for me to accept if they wanted to go back and were not coping emotionally.

Update 4th October 2019

I apologise for the lack of updates on Matilda, but things have been very tough for us all as a family the last 6 months, Matilda health is a cause for concern as she has had a couple of diagnosis’s added into the mix which are proving problematic to treat/ resolve.

After 2 years of suffering from severe nose and gum bleeds and lots of bruises she has been finally diagnosed with 2 bleeding disorders that are a concern and we are currently awaiting treatment plans for these now she has been referred to a bleeding disorder specialist.

Whilst I cannot go into much detail at present Matilda has been refused spinal surgery in the UK which would prolonged her life and stop her organs failing further due to the massive risk to her life during and after the surgery and the particular surgery she needs deemed experimental in England.

We are therefore going abroad in the next couple of weeks for a second opinion and an assessment from 3 other hospitals, we hope and pray one of these hospitals – who have all performed the surgery she needs many times – will accept Matilda for the surgery and save her life.

It’s been a horrendously stressful few months for us not knowing if Matilda will or will not get the surgery and whether the poor prognosis and life expectancy we have been told will become a reality or not…we are still in limbo I am afraid.

Whilst Matilda is completely unaware of the Ethical issues relating to all this, she is anxious as all this talk of surgery and not knowing where she will have it, overhearing Drs talking has all taken its toll on her and she is very sad and down in the dumps lately which is not like her and however hard we try to protect her from overhearing things, it’s inevitable someone will ask or mention something when she is around.

We have made the decision that I will take Matilda abroad for the assessments and Andy will stay home with the other children, try to stick to their normal routine and keep them in school. We felt this would be best for them at this time and they all seem to understand and are happy to stay home as they don’t want to be stuck in hospitals daily.

That doesn’t mean they won’t miss us terribly and maybe be a little sad, so if anyone wants to send Oliver, Layla and Zachary a card, letter or picture from mid October to early November they would really appreciate it and so would I.

The kids love waiting for the postman to see if he brings post and they haven’t had much lately apart from their amazing monthly parcels from their lovely parcel senders.

I think it will take their mind of things receiving some happy post.

In and amongst all this little Zachary has been diagnosed with Epilepsy which has shocked us. He had his first seizure in Feb this year and has had 5 since each requiring hospitalisation. 

I apologise for not posting on Post-pals FB page but I have come off all social media for a while whilst we are in turmoil over all this with Matilda and I am trying to keep it private and avoid all the questions I cannot answer etc, I do however want to say a huge thank you to each and every one of you who have sent the children post and to the amazing monthly senders and to Postpals for the gifts, flowers and cards you have sent.

Thank you Post Pals for all your support

Update 14th April 2019

Sorry it’s been a while since our last update on Matilda, things have been pretty hectic and stressful for us all the last 6 months.

As some of you may know Matilda was due to have spinal surgery last December, but I unfortunately broke my hand badly and had to have surgery myself the day before we were due to travel to Oxford for the surgery, so we had to cancel at the last minute.

There has since been many meetings with the professionals and various teams who will be involved in her care in Oxford and as a result of these meeting major concerns were raised about Matilda’s underlying medical conditions and how they make the surgery even more risky.

The proposed surgery will be carried out over two days under the same general anaesthetic – on day one the neurosurgeon is to operate on Matilda’s brain to put a pressure monitor inside her brain and the plastic surgeons will open her back. The neurosurgeons will then spend the rest of the day detethering her spinal cord and she will then be taken to ICU and kept under the same anaesthetic overnight. Day 2 will be the spinal surgeon removing 4 abnormal vertebrae then using rods, screws and plates they will build her collapsed spine back up and put rods in.

This will be to give Matilda the space she needs from her waist to pelvis as currently her spine is collapsed and all her organs are crushed and not working properly.

The main concern is her lungs are only 50% the size they should be because they currently have no room to grow. If they do not have room soon they will reach a point where they stop growing and they will be unable to sustain her oxygenation as she gets older.

We were told if we don’t go for the surgery the chance of loosing her is high, if we do have the surgery there is also a risk we could loose her – but as this is so unique they cannot give us any statistics.

It’s more complicated because Matilda’s organs and blood vessels are not where they should be. They are squashed, and her spinal cord is very close to the surface of her back, stuck in scar tissue. The ICU team are concerned because she has clotting problems and because she has no reserve – she cannot control her blood sugars and the risk of a severe stress response during surgery could put her in real danger.

Having said all this we feel like we are damned if we do and damned if we don’t and if this surgery is successful it will be life changing for Matilda and will change her life for the better and give her an excellent prognosis and life expectancy,

We had a big meeting with the neurosurgeons, plastics, spinal surgeons, anaesthetists and ICU consultants last week and they will now have another meeting and decide if with all the risks highlighted they meet the ethical guidelines for doing the surgery.

Aside from all this, Matilda has been very well the last few months, we have had a few quick hospital admissions for Influenza A, temperatures or infusions but this has definitely been her best winter.

Layla and Matilda have just started Brownies which is fantastic and they love it. I have to stay with Matilda but she isn’t bothered and is just so happy to be with the Brownies having lots of fun.

Little brother Zachary, on the other hand, has had his first experience of hospitals, doctors and illness as 2 months ago he had a bad seizure out of the blue one day that scared us all to death. He ended up in hospital for the weekend and has since had another one at home and one at school.

This is a great concern for us as he is fit and well and never ill. We have seen a neurologist who has studied the videos I took of the episodes and read the hospital notes and she thinks he has a form of epilepsy called Panayiotopoulos Syndrome ( it’s so much easier to spell that pronounce, ha ha) 

He has had an EEG and was put to sleep last week for an MRI scan. He has been so brave and just taken it all in his stride. We just now need to wait for the reports.

Oliver is doing well at school. He has also had a few weeks of being unsettled (Oliver has Autism), he isn’t sleeping very well and seems to have developed some anxiety issues which are completely new and we do not know what’s triggered it. 

I just want to say a massive thank you to everyone who has sent the kids letters, postcards, pictures, gifts and parcels, every one is greatly received and the kids love to receive post from Post Pals.

Update 9th September 2018

I can believe we have been a member of Post Pals for almost 9 months now! We would like to thank everyone who has sent Matilda and her siblings cards, letters, postcards, gifts and big parcels. You have all made my children very happy and put massive smiles on their faces. So much so that they now wait daily for the postman to come down the drive to eagerly see if he has any mail for anyone!

It’s been a very touch year for us as we have had to experience many firsts without our beloved Daisy….Christmas, New Year, Easter, her 21st birthday and the anniversary on her death in August. Again I would like to thank Post Pals for the love and support we have had and some beautiful messages and cards sent to us. Matilda has been relatively well this year, we have still had a few hospital admissions, mainly for operations to put in new central lines or tubes but nothing prolonged or serious which is really good news. We continue to go to hospital weekly for blood tests and for Vitamin K and A infusions but it’s only a few hours at a time so we can deal with this. We were invited on Post Pals trip to Chessington in April…it was amazing! We have never been before and we were pleasantly surprised how much there was to do there and what a brilliant adventure park it is, there was so much to do. It was nice to meet so many lovely families and meet Vikki and Ally, more friendships formed. The kids …and us had a great time, the kids loved the themed bedrooms and all the animals. Matilda’s highlight was the Giraffe feeding and the ice cream competition.

As summer comes to a close the kids are back at school … little Zachary started reception class and Matilda continues her home education with me. One of our biggest achievements to date happened this week…..Matilda won a Wellchild Inspirational child award. We went to the awards evening and met HRH the Duke and Duchess of Sussex (Prince Harry and Meghan) Matilda was all over the media and online (which she loved) and Prince Harry actually presented her award (how lucky is Matilda) I am so proud of Matilda, she goes through so much but never complains, always has a smile on her face and just takes each day as it comes.

Story Written 2017

Skylah was a healthy, happy baby born on 26th May 2013. In September 2013, Skylah was diagnosed at four months old with bilateral retinoblastoma (eye cancer in both eyes). She underwent six rounds of chemotherapy and we got the all clear in January 2014. When we went for her next check up we found out she had relapsed in one eye and she would need more chemotherapy, this time it was called intra arterial chemo. Whilst they were doing the procedure they came across a blockage, so she was sent for an MRI. When the results came back we were told they had discovered a brain tumour in her pineal gland, she had a seven hour operation and had intensive chemotherapy which ended October 2014.
We were over the moon that it had finished and for about a year and a bit we enjoyed her being clear of a brain tumour! She still had regular checks on her eyes and needed regular treatment to keep her right eye stable but all in all everything was looking up for us!
In January 2016 we took Skylah to A&E as she was walking a bit oddly and when they did an MRI they found that she was covered in tumours from the bottom of her spine all the way up to her brain! We were completely devastated!
We got told there was nothing they could do for her apart from palliative radiotherapy which ended in March 2016. We took her home to make as many memories as possible, but she has been a complete superstar and is amazing all her consultants. Skylah is still with us over a year later and we are so thankful for every day we have with Skylah.
Unfortunately on the 23rd August 2017 we had to make the decision to have Skylah’s eye removed and she is having the operation this Wednesday 30th August 2017.

Update 2nd June 2018

Nothing really new with Skylah apart from taking each day as it comes there is still no treatment out there for Skylah and she is still terminal. Skylah became a big sister back in October and loves her little brother very much! Skylah is so looking forward to the party, we can’t wait!!

 Story Written 2017

Vicki is a bright bubbly 14 year old, her sunny positive nature has helped her get through this journey! Her innocence and smile makes you fall in love with her! She was born with autistic locked in syndrome: this means Vicki doesn’t understand the world we live in, or when people talk to her if they ask too many questions she will walk away! She masks her disabilities very well. Vicki was then diagnosed with acute lymphoblastic leukaemia, this cancer diagnosis shook us all to the core but Vicki truly doesn’t understand what it’s all about. We are so proud of how she has dealt with the whole treatment process as Vicki will not be touched by people she doesn’t know! Vicki has severe learning disabilities, global development delay, OCD, severe anxiety, ASD and dyspraxia.

Update 1st October 2019

We would like to thank everyone for the cards and letters Vicki has received, they have such a huge impact with Vicki’s mental health. They bring kindness and a smile that is such a pleasure! She loves us to read the letters, cards and enjoys looking at your pets. Vicki loves animals.

Vicki is still on high doses of pain medications. Just started her on Clonidine to try and help with her tics, under a psychologist due to her extreme anxiety and looking at other underlying disabilities.  

Vicki is desperate for friends but due to her extreme anxiety and SLD, friends struggle to understand her. 

Update 11th February 2019

Vicki is doing really well from the oncology side of things. Blood tests are showing she is still in remission, which is fabulous to hear.

Nearly hitting 12 months out of treatment. Her mobility is really poor with pain all the time in them, that even medication isn’t giving her much relief. Anxiety issues are really high at home and school, constantly worrying about everything, she comes home from school every day totally exhausted and needs a couple of hours sleep! Then she is wiped out most weekends, although we do try to get her out & about. She still loves colouring and enjoying the Julia Donaldson DVDs as that’s what is watched in school. We try to encourage her to walk Teddy (our Bichon) as much as possible, as Vicki has always enjoyed taking him for walks! Not always possible but we do try to encourage her to do it.

Many thanks for your cards and letters. Vicki really does enjoy receiving them xx

Update 12th November 2018

Vicki is still struggling with pain in her bones, more so her legs she finds it very difficult to walk for any distance and stand for some time! The hospital upped her pain medications but they really knocked her about with drowsiness and headaches! Thank you for your kindness its so nice to see her smile at the post she receives.

Update 10th October 2018

Vicki is 6 months out of treatment for ALL (acute lymphoblastic leukaemia) doing absolutely amazing although the after effects of treatment have been snowballing. Vicki has been diagnosed with Motor & Vocal Tourettes, Avascular Necrosis of both legs, and severe anxiety issues. They cannot get the pain under control, so she’s on lots of different medications including slow release morphine, but her sunny nature and smiley face always brightens our days! 

Update 6th January 2018

We would like to thank you so very much for giving Vicki the chance to receive such lovely post & gifts! When things are really bad Vicki enjoys us reading the cards/postcards to her! She loves the pictures of the animals & is getting a little collection which she just sits and looks at in her own time!

Vicki still loves colouring, taking Teddy for walks when well enough, listening to music – all types! She loves going out for meals with her sisters – Jade, 25 and Amber, 17. Who also enjoy taking their sister out, dressing her up, doing her hair & make up! They also enjoy the pantomime & Disney on Ice together, we encourage them to go to for quality time with each other! Sometimes it’s hard for Vicki’s sisters to see her so unwell & it really upsets them! Disney films and musical films are still a big hit, Mr tumble makes her laugh! And she loves light-up sensory toys. Treatment for ALL is going as well as it can be! She suffers from lots of bone pains & aches. She gets exhausted easily, some days she’s too tired to get out of bed. She cannot walk far without it causing her lots of pain! Her immunity is still very low so we are constantly checking to make sure it is okay to take her anywhere. The tremors are starting to have an impact on her as carrying a drink or just lifting a cup will result in it being spilt, she’s finding feeding herself awkward & at times frustrating.

Results from the MRI scan on Vicki’s brain have shown up too much fluid around her brain & pockets of fluid within her brain where it shouldn’t be! As the high doses of steroids & chemotherapy can cause some of this, they are going to do further investigations after treatment has finished! Also doing lots of genetic testing to see if her delays & disabilities are genetic!