Please do not send any food items to Sadie

Story Written August 2020

Sadie is a sassy 4 year old with a huge personality. Sadie has suffered with gastro problems since she was born and has spent over a third of her life in hospital. She has had around 90 admissions to hospital in her little life and over 20 general anaesthetics. All she has known is feeding tubes and monitors and, unfortunately, a lot of pain. After years of trying different feeding tubes, feeds and gut rest we are now in the middle of a very long admission to Great Ormond Street where she has now been diagnosed with a very rare condition of chronic pseudo intestinal obstruction. She is currently dependent on TPN into a central line and is awaiting an ileostomy this week.

Update 28th February 2024

Sadie has had a rough few weeks and is currently in hospital after having a new central line put in. She is now on the mend and we are hoping to be home early this week. Her PN has increased to 15 hours a day which has helped to make her feel a bit better.

Other than that she continues to be the most amazing, strong and happy child. 

Sadie loves Roblox, Lego, crafts and Barbie and at the moment anything Stitch. We are so thankful for the post that she receives and the kindness of people that go out of their way to make her smile.

Riley is now 12 and loves Pokémon, films and gaming – he finds it really hard when we are away in hospital for a while but has made himself busy by building a house for Sadie out of the balloon boxes that PostPals sent, so that will be waiting for Sadie when she gets home.

Update 17th June 2021

Sadie had a recent admission back into London for a relocation of her gastrostomy tube. This was meant to have been a relatively smooth operation but sadly Sadie ended up quite poorly afterwards and had to have 2 weeks of IV antibiotics. Currently things are ticking over OK and Sadie has been enjoying the sunshine, although the hot weather is not great for someone on TPN and we have to keep increasing her amounts. 

Thank you to everyone that sends beautiful hand written notes, cards and drawings, special thank you to Vivi who sends Riley his monthly parcels … it’s actually like you know him.

Update 2nd March 2021

Sadie is now home from hospital with her ileostomy, gastrostomy and H ickman line. She is completely dependent on her TPN but has coped so well with adapting to this new way of life. We are due to go back into hospital soon for some more surgery (so dreading that) but for now we are coping well and Sadie continues to live life to its fullest. Thank you so much to everyone that sends cards and presents to Sadie and Riley, they really do brighten their days and it has really helped to make Riley feel included, so thank you.

Story Written August 2020

Immy was diagnosed with ALL in July 2016, aged 6. She had 2 and 1/2 years of treatment, but relapsed six months later in July 2019.  She has spend the majority of time since then in hospital. She had chemo and immunotherapy treatments transfused 24hrs a day for 28 day cycles, between July and November in Addenbrookes. Then she spent 100 days in complete isolation in Bristol (500 mile round trip from home) having a Bone Marrow transplant.

We came home in March, straight into lockdown! Immy was recovering slowly, then in June she developed a rare, serious post transplant complication affecting her kidneys, so we are currently still going to Addenbrookes twice a week. We are having to shield until January so this will be our second Xmas without seeing family. No school for siblings either, so cabin fever is setting in. This is day 240 of isolation and no hugs from family for us!!

Imogen has a twin sister Charlotte (10) who was going to be her donor, but it turns out they are identical (a huge suprise) so she was not a viable option and her sister has a greater risk of developing too. Imogen has a brother Liam (11) who was diagnosed with Arthritis five years ago, in multiple joints including his eye. He has had a cataract removed and is having further laser surgery in Oct. He has frequent hospital visits, has high anxiety about his meds and is very needle phobic! 

Thank goodness Immy is a real trouper, she is unbelievably co-operative with all her pokes and procedures, much to our relief, so grateful for that! She is just amazing, and such an upbeat, comedic character, a real inspiration.

Update 23rd March 2021

We feel like the time has come for Imogen, Charlotte and Liam to say goodbye to Postpals. Immy has been able to return to school and although she has found it hard, shattering and has been incredibly shy, it will just take some time to get used to being social again. Postpals is such a wonderful charity and we have met so many wonderful people through it. We would like to thank everybody so much for all their kind words and support over the months we have been a part of it.Thanks in particular to our monthly sender’s Lizzie, Julie and Geraldine. We wish all the pals and their families all the best.

Update 6th February 2021

Immy had her one year post transplant anniversary 29th November. A couple of hospital stays that month and horrible shingles for the occassion, but luckily we managed to celebrate it at home, with lots of lovely supportive post. (Thank you everyone!)
We are delighted to say that throughout December, although there were a few trips to Addenbrookes, we did not have to visit our local hospital at all, for neither Immy nor brother Liam – this has not happened for six years!!!
Immy is 14 months post transplant now, and getting stronger, but the road to recovery has been long and slow. We still haven’t had a single visitor in our house since July 2019 as she has been shielding while her immune system recovers.
The good news is that at the end of January ’21 Immy finished the treatment for her complication from last May/June. Treatment did a marvellous job in suppressing the part of her immune system that was attacking itself… now just waiting for it to build back up over the coming months as part of it  is still at rock bottom. 
We have just had 11 days in hospital over the last couple of weeks with temperatures and a few virus’ on board, so she is still classified as extremely vulnerable, but roll on summer and covid vaccines!! 
Immy is now starting to have all her childhood vaccinations redone for the third and hopefully final time. Not an easy task anymore as Immy has totally had enough of co-operating! (Can’t say I blame her!)

Story written July 2020

My daughter Nimrit was born on the 29th December 2013 and was diagnosed with MEN2B in october 2017, but has struggled with the symptoms all her life. I am a single parent but I am not alone, I am so blessed to have such a wonderfully supportive family and friends who have been by our side.

At 6 months my daughter started to get urinary tract infections, she didn’t respond to oral antibiotics as her infections were always ESBL ECOLI. When I mentioned to the doctor at 1 years old that she didn’t open her bowels for 5 days, I was told it was fine and that it was normal.  The days between a dirty nappy got longer and longer, from 5 days to 7 and then 11 days. UTIs were occurring regularly and trying to capture wee samples from a baby was so stressful.

Going into hospital also became a regular thing and it wasn’t long before my daughter would realise where we were going in the car and she would cry and beg for me not to take her. We would spend weeks on end on the children’s ward at Whipps Cross Hospital in East London. Nimrit was on 8 sachets of Movicol and other liquid syrup medication too and getting that into a 2 year old was not easy, so she had an NG tube fitted.

The amount of medication would often make her feel sick and the NG would often end up coming out, which only meant one thing, another visit to the hospital to be held down for the tube to be inserted again. It was a never ending cycle of UTIs, cannulation, hospital, antibiotics, medication, NG coming out, back in hospital….

Things then got much worse when I had to take her in for manual clean outs, under anesthesia. I think this was one of the hardest times for me, seeing my daughter laying motionless, not reaching for my face to touch for comfort or calling my name. After numerous clean outs they took a biopsy and they also fitted a permanent peg in her stomach. I was told the results of the biopsy were clear. Then 2 months later I took her to A&E because it had been 16 days since she had opened her bowels, which is when they looked at the biopsy results again and was told it was abnormal and showed Neuronal intestinal dysplasia (NID).

She was going to have an ileostomy bag fitted after her consultant returned from a European conference. He happened to discuss her case with a professor and he advised that as her results showed NID, they should test her for a few other things. She had the tests that were suggested and 8 weeks later in early September 2017 she was diagnosed with Men2B. She had her thyroidectomy at GOSH on the 6th Nov and is now back and forth to the hospital checking the calcitonin levels.

She has never had tears since birth and I thought this was unrelated.  She had 2 surgeries to unblock her tear ducts which were unsuccessful. The next surgery would be to break a bone in her nose and do a complex surgery, which would have left a scar on her face; with all the other problems she was having with being constipated, I decided against the surgery, and I am glad I was guided this way, because it turned out this was not unrealated, but a symptom MEN2B. Nimrit also has unrelated Talipes (Club Foot).

With all that has happened to her, she is very traumatised but still going strong.  My daughter is very aware of everything and earwigs into every conversation I might be having about her to someone. So now every time my phone rings, she says, ‘Mum who is it??? What they say??’. I know at the back of her head she wonders whether it’s the doctor calling.

From a very young age she started understanding things, my phone would ring and I would be told that based on her urine sample, she has a UTI and that she would have to go on IV antibiotics, so that meant a trip to the hospital, I would have to lie to get her out of the house. The worst thing was that I knew Nimrit was very hard to cannulate and that would mean she would be poked many times with a needle.  It would break my heart have to be the one helping the doctors to hold her.

Her consultant, the play specialists and surgeons are all great and very supportive and I find comfort in their continued support. When Nimrit plays alone she talks a lot about what she has heard, big words like my doll is constipated and had a biopsy, hearing her say this is very upsetting.

She is very cautious around people, even close family members, it has taken years for her to get close with my siblings, even then she very rarely leaves my side but over time has become comfortable with family now but at times Nimrits anxiety can be bad. Nimrit has good days and bad days. We take each day as it comes.

Update 5th November 2024

Thanks for the amazing work you all do and for the wonderful post, from everyone, that we receive.

Nimrit has been having on going trouble with her Hickman line and so we are waiting again to see if we can increase the chemo dose. Her constipation is bad again and this causes much pain for her. She is on strong pain killers and her mood is all over the place because of this

Nimrit’s interests include pampering, Roblox, Descendants, Wednesday, zombies, Disney, slime. She also loves clothes and fashion and wears age 11-12 size. Her favorite shops are Next, River Island and Primark. 

Update 30th December 2023

To my Post Pals family… Firstly, apologies for the lateness in thanking you all for being here throughout, sending love, cards and gifts throughout the year and for the Diwali, Halloween, Christmas and Nimrit’s birthday post. We have had a rough journey this year and it has got harder. It will always be hard and heart breaking but having your prayers and blessings helps immensely. 

Thank you from the bottom of my heart. 

Update 25th March 2022

It’s been a difficult year in and out of hospital which is still ongoing unfortunately. Thanks to Post Pals, its kept Nimrit going, as she loves opening all her post which brings her happiness with lots of smiles. She loves it when young children also write to her and also loves all her gifts that are sent to her. Nimrit has also enjoyed her Costa giftcards from Post Pals as she loves a Costa Treat.

Update 26th March 2021

Nimrit has another mass in mouth that we are waiting on surgeons to arrange a date on moving. She will have to stop treatment before it’s done as it causes more bleeding and longer healing time.  Nimrit is also having sudden headaches and sweats so we have had some tests done to check her adrenal glands. She is also still feeling very tired all the time. Please could we remove that she like arts and crafts as she has a lot of craft stuff at the moment please. We would like to thank everyone who has posted to Nimrit and made her smile.

Update 2nd September 2020

Nimrit is having a pre opp assessment on 4th sept and me and her will need to get our covid test done. I know she will hate it as she hates swabs being done, so I am dreading it. All being well on the 7th she will have 2 surgeries done, her masses (tumors) removed from mouth and her throat procedure and airways checked. It’s all come at once but on the 17th we will meet her oncologist to discuss treatment and find out more about it. Nimrit has told her siblings (cousins who mean the world to her) about PostPals. Unfortunately she won’t be going back to school due to the surgeries.Please keep her in your prayers God bless and thanks so much to you all.

Story written April 2020

Harry is 11 years old and lives with Severe Brittle Asthma and Type 1 Diabetes. He was diagnosed with Brittle Asthma aged 4, a rare type of acute asthma which has no triggers and is very hard to control. He has had several admissions to hospital over the past 7 years, and his diagnosis was changed about 2-3 years ago from ‘Brittle Asthma’ to ‘Severe Brittle Asthma’ due to the severity of his attacks and that despite being on all the right medication, it is classed as uncontrolled. Then on the 10th September 2017 aged 8, Harry was also diagnosed with Type 1 Diabetes, with no family history, this came as a massive shock. Harry now has 2 life threatening conditions that he has to live with for the rest of his life. He has good days, bad days and horrific days but his strength amazes us.

Unfortunately on the 3rd January 2020, Harry had a severe asthma attack at home, and on route to the hospital via ambulance, he had a Respiratory Arrest. Luckily the ambulance crew, and all the doctors and nurses in resus were amazing and brought my boy back. We feel so lucky to have him, we know how close it was. Harry does struggle mentally with his health conditions, school is a huge challenge and his anxiety can be so severe that he won’t want to go out and will isolate himself in his bedroom. He has a huge passion for drawing, animation and is an amazing artist, creating cartoon strips and bringing characters from programs he watches, to life.

If you look at Harry, you would think he is a normal 11 year old boy, but the daily challenges that he has to face, and will do for the rest of his life, amazes me. His strength is incredible and he is truly my warrior.

Update 19th October 2024

Harry: has started his final year at secondary school and is starting to look into his options for college. Harry is really into his Art, Animation, VFX and Gaming Development. It is Harry’s passion to seek a career within the creative industry and expand/explore new skills. He has been writing his own story for over 3 years, and his dream to is bring his characters and story to life through animation and digital talent. 

Health wise, Harry is doing well. We have been very lucky to have no recent hospital admissions or worrying scares. This of course, has allowed Harry to shine and grow, being able to concentrate on his education and he is becoming a very well mannered and caring young man.

Harry’s interests are: Computers, STEAM ( one of the most popular digital video game distribution platforms to buy and play video games), Manga Series (such as Demon Slayer, Jujutsu Kaisen), Five Nights at Freddy’s (FNAF) and also playing games such as TF2 (Team Fortress 2) and Overwatch (Xbox One)

Poppy Kaye has had a tough start to her academic year. She is currently having a few health issues herself but finds comfort in having such a good relationship with her brother, who always cares and looks out for her. Poppy always enjoys reading any post that is sent to her, especially photographs of people’s own cats! She has a very loving and sensitive side to her, and when she receives items, she is always so grateful that someone has taken the time to look at her interests and send her a gift.

Poppy interests are: Jelly Cat plushies, Hatsune Mika Figures, crystals and gems, Manga Series (such as Demon Slayer, Jujutsu Kaisen), Five Nights at Freddy’s (FNAF). Poppy enjoys shopping especially at Smyths & HMV. Poppy loves all animals, but especially kittens, ducklings & rats!

Update 3rd February 2024

Harry has been able to attend his school most days, and is thriving really well. He is now in Year 10 and has been producing some great work in IT, Food Technology & Art (he was named Artist of the Week recently).

Health wise has been a whirlwind. Harry’s asthma is very well controlled at the moment, and his asthma team are really pleased with the stability of it. Unfortunately the same can’t be said of his Diabetes. In September, Harry was extremely poorly whilst on a Scouts Weekend. His blood sugar levels were unreadable because they were so high, and his ketone levels were at a high of 6.2 (they are supposed to be less than 0.6). Once we arrived at the hospital, they rushed us through to resus where we was told that Harry was in DKA (Diabetic Ketoacidosis – a serious complication of diabetes that can be life threating). We was told that Harry was moments away from falling into a diabetic coma. This of course was a stressful time for all of us, and another unwanted experience of us nearly losing Harry. Due to Harry’s medical issues, he does experience depression and his mental health is affected. He also has a diagnosis of Autism, so he has a lot to cope with. He’s not a little boy anymore, and turning into a handsome (taller than his Mum) teenager. I’m extremely proud of everything that is thrown at him, and how he manages his day to day life.  

Harry’s interests: Likes to collect figures and plushies of Pikmin, Five Nights at Freddy’s & Pokemon. Harry enjoys editing/creating his own animations & videos and regularly uses a PC program called STEAM. He also loves rollercoasters and going to Chessington & Thorpe Park (we are yet to visit Alton Towers – it’s on the to-do list).

Poppy-Kaye’s interests: Likes Nintendo Switch, Animal Crossing. Poppy is a huge animal lover, her favourites being cats & ferrets. She also enjoys collecting crystals (she has a huge collection!) and attending Theme Parks with Harry.

Update 26th August 2022

Harry continues to have good and bad days with his health. The hot weather lately has had a major reaction to his diabetes levels, which has had a knock-on effect his asthma and mood. He has been feeling quite upset, emotional and withdrawn. He has spent most days of the summer holidays on his computer, continuing his animation and creating videos online. We continue to appreciate all post that is sent to us. Thank You 

Update 31st March 2021

Harry has had a bit of a testing time the last few months, with some close calls of having to go into hospital. Luckily we was able to avoid this, although he has still been quite poorly and it’s been heart-breaking to see after him being so well. Harry has had to miss some time from school but we’re hoping he will be able to return full time very soon! We are all very much looking forward to the upcoming Chessington Trip in May as both Harry & Poppy-Kaye are massive rollercoaster fans and Chessington is their favourite place to go. If they could, they would go on The Vampire ride non-stop! Thank you again to everyone who has sent cards/letters and gifts to Harry & Poppy-Kaye, I’m sorry that I can’t thank each and every one of your personally, but please know it is also appreciated!

Update 30th October 2021

Harry has had a very busy month with new beginnings as he has started attending a specialist senior school. It’s a much smaller school which has a max of 6 students per year group, caters for those with medical conditions/Autism yet still works along the national curriculum. Harry is very excited and looking forward to his next adventure. We have been very lucky with Harry’s health and have not needed any hospital trips or admissions lately. We continue to appreciate ALL the post Harry and his sister receives. Getting cards/gifts from all the over the world is very humbling, and knowing that people far, far away from us, in different countries like New Zealand and France, are taking the time to write to Harry. Thank You So So Much! 🙂 xx

Update 14th June 2021

Harry has been a bit poorly on and off for the last couple of months. Further investigation is needed for Harry as the hospital feel that there may be an underlying problem which is affecting his lungs, which then has a knock on effect with his Asthma. Tests and scans may be needed to take place but this is something that will be decided within the next couple of months. Harry is still not fully back at school, and is currently on a reduced timetable. Harry is struggling mentally with everything he is taking on but we are embracing each day one step at a time. We still hugely appreciate all post that is sent to both Harry and his sister, Poppy-Kaye

Update 26th March 2021

Harry’s health has been stable since the New Year started. He is still currently shielding but is due to return to school after Easter. Harry has now also been given a diagnosis of Autism. Something we have been in the process of for 18 months. His asthma has been good so far with no hospital admissions needed and his diabetes has been controlled. Harry still has daily struggles with with health and now his diagnosis of Autism but on the whole, he is doing well. Thank you to everyone who has sent Harry and his sister Poppy-Kaye letters and parcels. It’s appreciated so much.

Update 6th February 2021

Harry has been home schooling since the end of November due to being classed as clinically vulnerable and having confirmed covid cases within his school. Despite this, Harry has been having repetitive severe asthma attacks and has had medication increased and new ones issued. A few occasions we have been close to being admitted to hospital but luckily we were able to control it at home. Harry is quite enjoying being at home as he feels safer and isn’t missing school at all. He really enjoys receiving and opening his post and we are so appreciative of everyone who thinks of him and his little sister.

Update 20th August 2020

Harry has Severe Brittle Asthma and Type 1 Diabetes. Both of these conditions have a major effect on Harry’s life daily. With his diabetes, he has to inject insulin before or after every meal, and he can suffer very low or high blood sugars which needs to be treated quickly to avoid any more harm or damage to his body. This has a major effect on his mood and what activities he can take part in within school and socially. We are approaching 3 years of his diagnosis and Harry still struggles to adapt to this way of life. His asthma is very unpredictable. Brittle Asthma is a rare form of severe asthma. It is difficult to control and can develop into a life threatening attack. Unfortunately Harry had a Respiratory Arrest in January due to his asthma. Thankfully he made a full recovery although he has been admitted again recently in June due to a persistent cough which triggered attacks. Harry has regular appointments due to his conditions, at least once every 2-3 months.

Update 7th June 2020

Harry is currently well, but we did spend some time in hospital a couple of weeks ago after having repetitive severe asthma attacks. His diabetes control is currently poor as he’s reluctant to self care, but it is not causing him any illness due to me having to take full responsibility

I honestly can’t believe the amount of post that both Harry and Poppy have received in such a short amount of time of being with you. Its truly heartwarming and I’ll be forever grateful for people’s generosity and the time they have taken to address them both. Thank you to everyone from England, to Scotland to New Zealand to Belgium! who have welcomed us to the Postpals family xxx

*Please do not send food to this family*

Story written 2019

On the 29th May 2019 we received the devastating news that our son, Rueben, had a malignant brain tumour. We have since been on the biggest roller coaster of our lives – and we’re still riding that same rollercoaster. 

It was all action stations after receiving the news, and Rueben quickly underwent surgery at Leeds Children’s Hospital to remove the tumour. It was largely a success. We then had to endure a lengthy 4 week wait for a biopsy to come back from Great Ormond Street Hospital which would establish the intended treatment he was to receive. I can safely say this was the worst wait we’ve ever had to endure. 

Our lives were once again turned upside down when 2 weeks after we received the results then we found out that Rueben’s tumour had grown back. So, once again, Rue had another 10 hour surgery to remove the tumour. Once again the removal was largely a success. Only minutes after him reappearing from surgery and hearing this good news, Rueben then took a turn for the worse and ended up in intensive care. In a heart beat we thought we could have lost him, but this boy keeps bouncing back with a defiance that’s admirable, and within a few days he was back on his feet.

Rueben then continued treatment, having 30 sessions of Radiotherapy to both his head and spine. This left him incredibly fatigued and only received a 5 week break before having then to commit to an intense 3-6 months of Chemotherapy.

We remain confident that his treatment will be a success, but nervous that we’re battling a very challenging tumour.

‘Life is like a bicycle, stay balanced and you will keep moving forward.’

Rueben set out after his first surgery to help other children, raising a small amount of money for Ward 52 at Leeds Children’s Hospital (LGI). Now, as a family, we are dedicated to helping Candlelighters which is one of Leeds Children’s Hospital’s close cancer charities.

Rueben is currently in hospital having only been home for less than a day after 3 weeks of his Chemotherapy. Both myself and my partner are taking it in turns to look after Rueben whilst receiving treatment as we also have 6 other children in our family.

See more about Rueben’s story here:

https://www.mirror.co.uk/news/uk-news/grieving-dad-whose-soulmate-girlfriend-18966740

Story Written 2019

Amelia is known as a SWAN – Syndrome Without A Name. She has multiple, complex medical conditions resulting from a neuromuscular disorder but as yet no unifying diagnosis. She is cognitively typical.

Shortly after birth Amelia was diagnosed with congenital upper limb arthrogryposis which caused contractures and restrictions in her upper body. She had less than 20 degrees range of movement in each arm, an obstructed airway and feeding difficulties as well as reflux.

She was initially referred to orthopaedics and physiotherapy then rapidly to paediatrics, dietician, speech and language and onwards to Great Ormond Street for multiple assessment, diagnostic and genetic testing.

Due to severe reflux, repeated chest infections and failure to thrive, aged two she had surgery to place a gastrostomy feeding tube and a Nissen’s fundoplication wrap to prevent refluxing into her lungs.

Aged three, Amelia was still failing to thrive and further investigations diagnosed gastroparesis (delayed gastric emptying with a wide range in severity of symptoms), a duodenal ulcer, multiple food intolerances and her diet was dairy, egg, soy, wheat and gluten free. We have over the years been able to reintroduce these foods in small amounts with varying degrees of success but limit consumption to prevent pain. Amelia has required yearly endoscopies since 2012 for management and diagnostic purposes.

In 2014, Amelia had her gastrostomy re-sited due to growth and gastric spasms. She experienced post-surgical complications and had to be re-admitted a few weeks later for a lengthy hospital stay and further surgery. Her recovery took over six months.

In recent months, Amelia has again experienced gastric spasms and an investigative procedure revealed this required intervention. In an effort to prevent a further re-site, Amelia went under anaesthesia to trial a different feeding device but unfortunately this has not been successful and we are therefore in further discussions with her surgeon.

Amelia has complex gastrointestinal and bowel difficulties caused by dysfunctional gut movement leading to frequent pain and severe constipation.

In 2016, Amelia had an ACE bowel stoma formed. Unfortunately Amelia’s site prolapsed on three occasions requiring further surgery and from late 2018 onwards, the washout procedures became unsuccessful because of the ongoing difficulties,

Amelia spent most of March and April as an in-patient on the gastro-intestinal ward at GOSH recently and in May 2019 had a colostomy procedure.

Amelia wears orthotics in shoes to minimise pronated (rolling) gait but Amelia’s ankles have become restricted in range in the last 6 months so she now requires overnight leg splints which have to be fitted before bed. She also wears arm splints overnight which we hope will prevent the need for surgery in later years. She requires daily physiotherapy on upper and lower limbs. This takes 15 to 20 minutes twice a day. Amelia eats small amounts orally but requires overnight feeds and at times daytime feeds to maintain growth. She has an unsafe swallow when fatigued and is at risk of choking so requires constant monitoring when eating/drinking. Past choking episodes have led to hospital admissions and airway/lung investigations under anaesthesia.

Amelia attends mainstream school with practical and physical support. She is being taught to use a scribe, dictate and work on a computer to aid her school work and minimise her tiredness. Amelia is a part-time wheelchair user due to muscle weakness, fatigue and pain. She is hyper-mobile in lower extremities which causes joints to extend beyond their range and can lead to dislocations.

Amelia takes over 10 different medications up to four times per day depending on type/timings. She needs support with all aspects of dressing and undressing although this varies depending on her fatigue levels. On “bad” days she will not be able to dress herself at all. On “good/moderate” days she may only need support with buttons, zips, shoe fastening etc.

In recent months Amelia has struggled emotionally with being different to her peers, not being able to keep up with her friends and being tired. With the help of the community nurses and GOSH, we are seeking psychological support for her.

Above all else, she is an amazing young lady; wise beyond her years, compassionate, caring and vivacious. She loves drama and singing and is an excellent mimic.

Update 18th November 2024

I can hardly believe that the tiny, feisty, scrap we brought home from hospital all those years ago has been in our lives for almost 16 years but in December, Amelia B/Minx will turn 16! 

This has been a huge year of personal growth and development. Whilst we have always been proud of her, her new found confidence, sense of self, of the robust, kind, considerate and independent young woman she is, has really come to the fore and it’s such a privilege to witness how she faces the various challenges of being a teenager (hard enough!) and living with chronic, life long and complex disabilities.    

In January this year after an admission to Great Ormond Street  and following some stressful tests and procedures, Minx was not physically or mentally well enough to return to school. In fact, we took a long, hard look at the situation and decided that something had to give.

Despite extensive tweaks and adjustments as well as a completely bespoke timetable, the last 4 years of secondary school 

have not been good ones for Minx (through no fault of the school) Matters came to a head when we recognised just how totally exhausted she had become from the physical and sensory demands and she was so very unhappy.

She was permanently exhausted, looked dreadful, her chronic pain was uncontrolled and she had for all intents and purposes ‘shut down’ – frequently falling asleep in class, coming straight home to go to bed, having to be woken for dinner and then going straight back to sleep again. Weekends were spent in bed; she wasn’t able to socialise with her friends or just be a typical teenager. 

We spoke with school about implementing a virtual education package and some 1:1 tutoring as an interim approach. Within a few weeks of trialling this, the difference in her was incredible. She was sleeping better at night, she had more energy, a greater capacity to learn with far better attendance, a reduction in overall pain and was generally a much happier, more confident individual. 

To our huge relief (and all gratitude to their parents) her ability to remain in touch and connected with her 2 closest friends  blossomed as she was now able to socialise and interact with them in a way she had not been able to do for a long time. Every afternoon when her friends got back from school, they would immediately connect online, watch TV shows and films together (complete with running commentary!)  read books, game, tease etc etc and then also meet up in person once a week or so, venturing into our local town or meet at each other’s houses. That friendship group has now grown and there are 6 of them so it often sounds like a party is going on in our house!

Minx began to advocate for herself in meetings with the myriad of health, education and social care professionals that come as standard in a life with multiple and complex needs and she was (is!) brilliant at it. It was such a relief to have ‘our’ Minx back as she had become a shadow of herself -I don’t think any of us had realised quite how awful things had become until we saw the changes in her. 

It wasn’t just the immediate family who noticed either. It was such a paradigm shift that the various medical, health, school and social care professionals on “Team Minx”  all commented and were astounded by the difference.  Although collectively we had reservations about her withdrawing further into herself without the day to day interaction of a typical school day, the opposite was true and she is in fact actually much more able to engage and happier to do so. She is also now better able to recognise and ask for help when she needs it rather than closing herself off. This wasn’t lost on any of us and so we began to look in greater detail about how an appropriate education package in a very small, suitable environment could be put together for her.

And that’s where things got harder. Whilst there are a myriad assortment of different SEN settings, there are no educational establishments (at least in our area and across the whole of Yorkshire) that can offer a place for a young person that is cognitively typical but with medical and physical needs as well as autism.  

So we have been trialling a sort of hybrid home educational package where she remains on roll with her existing school facilitating matters. However, as with many things disability related and especially where funding comes into it, this is not straightforward and I seem to spend vast chunks of time in meetings, on calls and compiling ever more paperwork. No rest for the wicked!   

Nonetheless, she is so much happier and now learning to live her life WITH her various diagnoses and all that comes with them rather than being defined by them that it’s all very much worth it and we (I!) will continue to rise to the challenge to, pardon the pun, ensure everything is in place so she can live her ‘best life’. 

Our sincere gratitude and thanks as ever to all those who so kindly think of our family, Minx especially and for all who send such thoughtful, generous and gorgeous drawings, letters, cards and gifts. I’m always blown away by the excellent drawings and the time and effort people put into really catering to her interests.

Minx is a fairly typical teenage girl, sassy and feisty! She loves fashion and has quite a unique look at the moment she is into corsets, snazzy tights like fishnets with patterns on (she has Hello Kitty ones at the moment). Loves meeting her friends in town and enjoys bubble tea and Chai Latte, also likes sweets especially American style ones, but nothing hard boiled. Loves Billie Eilish, Stitch and XBox with her friends. Also make up and nails.

Update 3 February 2024

Firstly thank you to you & all supporters/volunteers for everything you do for Amelia and our family.

Amelia is now 15 and remains obsessed with all things Billie Eilish & adores Billie merch 😄 Every Christmas & Birthday she adds “Billie” to her list and her ultimate life dream would be to meet her. 

Amelia loves makeup, perfume, nail art/polish (darker colours). Enjoys reading and frequently goes to The Works to pick out discounted books. Our cat Tilly is very precious to her. 

Amelia likes Stranger Things, Stitch, meerkats, Copic markers for drawing – she is very artistic on paper & also using her ipad.

Lindor red or black chocolates are one of her favourite chocolates and her favorite sweets are tang-fastic haribo, nerds & Millions.

Amelia likes going into town with her friends & heading to Claire’s Accessories, Starbucks, The Works as well as Superdrug & Primark. She also enjoys perusing second hand shops. She is very stylish clothes wise, putting together unique & quirky looks. She favours pleated mini skirts, fishnets/ripped tights, lacy accessories and lashings of liquid black eyeliner! She is very petite & recently pierced her own nose at home! 

Health wise, Amelia’s gastro issues continue to be ongoing, painful and difficult to manage. Her muscle weakness and fatigue are quite profound at times, often leaving her very tired and needing a great deal of catch up sleep. There have been additional health complications/issues added to the (already very long!) list but her overall neuromuscular disease still remains of unknown cause so far despite extensive genetic testing. 

Amelia is autistic with severe anxiety and finds the school environment very demanding and challenging despite a bespoke timetable. She likes using fidget devices/discreet toys & has small communication cards to hand when she can’t speak (selectively mute).

Amelia has a wicked sense of humour, is fiercely loyal and enjoys being part of our lively, crazy, busy family. She is a thrill seeker (rollercoasters & theme parks!) and although can come across as very shy and timid, she knows her own mind & isn’t easily persuaded if she doesn’t want to do something. All in all, something of a “pocket rocket!” 

Update 17th June 2021

Amelia has been very lucky to receive a beautiful blanket that was either knitted or crocheted for her, as well as her monthly goodies from Ellie which are always amazing! 
In  recent post she has received sweeties, chocolates and 2 Billie Eilish T-shirts from a a variety of people. There have been some lovely colouring things, scratch art, recipe ideas and stickers from various senders too, as well as some smellies for the bath. We have very much enjoyed the letters, postcards and drawings. Some writers are very good at creative pictures/designs!
George gets brilliant parcels from Sophie every month which he loves opening. He has also had some great postcards (a recent ‘ghosted’ train image in a library immediately comes to mind) and been included in gifts in Amelia’s parcels too –  such as a mindfulness colouring book and chocolate.  
Amelia has been back and forth to Great Ormond Street a number of times in recent weeks to see the neuromuscular team and gastro. Her neuromuscular assessment findings made us a bit sad as she has deteriorated in stamina and strength again and although her spinal curve has largely remained the same, evidence suggests that it will continue to deteriorate, especially as she grows. 
We are trialing some new medications to help with gastrointestinal issues. It is early days but we are cautiously optimistic that her pain is better controlled now and she is getting more sleep which is a definite bonus! 
Amelia is still on the CEV list and remained shielding until the end of March. She started back at school after the Easter holidays. We were a bit intrepid about her going back, especially with the ever new covid variants, but equally, her mental health is so important and having already missed so much of year 7, we felt that she should attend when she could. We hope Amelia will be vaccinated very soon, since the recent announcement that the Pfizer jab has been approved for those aged between 12-15.  
Amelia’s powerchair continues to make a huge difference to her independence and in enabling her to attend school and keep up with her contemporaries. She is only able to manage half days and then comes home for a big sleep but we are in the process of getting 1:1 home tuition for the afternoons. 
I am often found to be running after her frantically if we go out and about together, especially walking the dogs. Amelia only appears to know 2 speeds: off or full steam ahead. I can’t work out whether she is trying to keep me fit or kill me off altogether!
Her obsession with all things Billie Eilish remains and she was delighted to find out I had managed to get tickets for a show next year, especially after the last show had to be cancelled due to covid. It’s going to be a long wait till next June I think! 
Recently she has watched Stranger Things which she has really enjoyed and has also been experimenting with makeup, hair and nails. My “baby” is so grown up!  
Please can we say an enormous THANK YOU to everyone who has been so kind and generous to Amelia and George and also to those who have written some lovely comments in the post to me (Lisa) We feel spoiled and humbled by your generosity and that you take time and effort out of busy lives and schedules to think of us. Can I also apologise that Amelia doesn’t tend to write back even though so many of you have included addresses for correspondence. Her neuromuscular condition makes her extremely tired and weak and on top of school work, it is just a bit too much for her, but she really does love reading all the brilliant things you send

Update 9th February 2021

Amelia remains on the CEV list, so starting secondary school in September was very hard and hasn’t been the greatest experience for her. 
Amelia’s profound muscle weakness, fatigue resulting from her neuromuscular disorder and significant pain and gastrointestinal difficulties, were exacerbated by school attendance so she was unable to complete a full week throughout the term. 
In spite of this she was determined to work hard, do her best and had started to make a few friends, so there were some positives too. 
When shielding recommenced in the 2nd lockdown, Amelia remained at home, remote learning. She returned for the last 10 days of the school term for half days but even on a reduced timetable she wasn’t able to manage them all. 
We are looking at ways to reduce her hours in school but still enable her to learn and interact positively with her peers when she eventually returns to in class learning. 
Amelia’s adoration (obsession?!) of Billie Eilish continues and although the concert she was supposed to go to last summer was cancelled due to the pandemic, the entire household is given daily briefings of everything and anything Billie related. 🤣 
Amelia was lucky enough to receive a personalised message from Billie which put the biggest of smiles on her face. Thank goodness these days everything can be viewed in digital format so that she can safely watch it again and again and not wear it out! 
We are waiting on another admission to GOSH for more tests and to switch to jejunostomy feeding, which should take place sometime within the next month or so. 
George is growing like a weed and doing really well. You may or may not know he is a fellow ‘tubie’. BUT after some really difficult years, things have improved enough that his feeding tube is being removed in the near future!  
Given that one of his first recognisable baby words was CAKE, the fact that for a period of time he was solely reliant on jejunostomy feeding was quite a hard thing to accept and hugely affected his emotional and overall well-being. 
This turn about is so amazing and fair play to George for battling on, pushing through and finding ways to manage/control his symptoms and regaining the enjoyment of eating “normally” again.
Thank you to Post Pals and all those who support. We are extremely grateful and very much appreciate your kindness and generosity. 

Update 21st August 2020

After a lengthy admission at Great Ormond Street from May through July this year, Amelia has had to be brave and mature beyond her years. She lives with chronic pain which the gastroenterology team have explained cannot be completely controlled unfortunately, as the stronger medications interfere with gut function. Her days are taken up with multiple medications, fluid balances and physiotherapy regimes. Night times are interrupted by medications, pump feeds and frequent wakings due to pain. In spite of all this, Amelia remains her feisty, funny and determined self (depending on your perspective and if you happen to be her parent, this can be both a blessing and a curse! 😁)
Hospital appointments continue to roll in fast and furiously, albeit mainly conducted online. When it has been necessary to attend in person, we have been very impressed with the measures taken by the NHS to safeguard and protect all. Thank you.
September 2020 sees the start of secondary school. Amelia is excited but also nervous, (as am I!) but no doubt her peers are feeling the same. We know she will tackle this with her usual aplomb and our thoughts and good wishes are with all in this situation…..especially Amelia’s teachers: May the force be with you!!  
I can’t pretend I am not nervous with COVID still very much present, but balancing mental health, social and emotional needs and education alongside physical health is so vital and important, especially in this transitional year of secondary school.  We may have to review attendance as the year progresses but we are focused on the positives. 

Update 13th July 2020

A huge thank you to all the generous, kind and thoughtful people who have taken the time and trouble to send happy mail in all forms to Amelia & George B. It has been especially appreciated during COVID19 as no doubt like many other families, we are shielding. 

Amelia has had another lengthy stay in GOSH and we have only just come home. This admission has been very hard for many reasons and COVID precautions have meant that the usual distractions of visitors, therapy dogs, entertainment teams, even hospital schooling(!) have been much missed. On top of that, we are trying to get to to grips with being told that this is the best things can be and lower our expectations of Amelia being pain free. A hard thing for anyone to deal with, never mind at the age of 11.  Nonetheless in her indomitable way, Amelia will if not “Keep Calm,” certainly “Carry on!”       

Update 27th March 2020

Amelia has attended a number of appointments at Great Ormond Street in recent months. Her neuromuscular review was a mixed outcome: she has lost more movement range in her upper limbs with more contractures and joint immobility, developed spinal asymmetry, although fortunately this is mild at present and will continue to be monitored. 

Her stamina/power has reduced further and we are trying to focus on building up small activities where we can help her with this, but it is tricky as muscle weakness and fatigue are sending her round in circles. The physiotherapist has suggested that we look at piano/key-board play to help with hand/arm therapy…we don’t have anywhere to put a great big one so will be looking into options for something portable….and ear plugs!! 😁   

Gastro issues remain problematic but Amelia keeps smiling. Thank you to everyone who gets in contact with us 🙂 and does so much for the children. Very greatly appreciated.

Update 1st October 2019

The monarch feeding device Amelia had placed in July to try and prevent needing a 3rd gastrostomy re-site has not worked out as planned and she is still experiencing pain and gastric spasms. We meet with her surgeon late October to see what thoughts are now.  Despite the ups and downs, Amelia remains her usual sassy self….which is both a good and a not so good thing depending on when she is giving out the sass!

George is still having lots of issues with his PEG-J and we meet with tissue viability and gastro nurses next week.

Story written 2019

Jack was born at 38 weeks with an unknown and undiagnosed neurological disorder. He was born via C Section and as soon as he was born he wasn’t breathing. The crash team were called and whisked him off to the special care baby unit (SCBU). He had no swallow and constantly aspirated into his lungs which made him very poorly. He would stop breathing all the time and require regular resuscitation. He was on and off the ventilators and needed a tube to breathe that went into his mouth and acted like a tracheostomy tube to help him breathe. At only 10 weeks old Jack suffered his first cardiac arrest and we were tragically told we had lost him. They were pronouncing time of death when all of a sudden they got the weakest of pulses.

They continued to work on Jack and he was transferred to Sheffield Children’s hospital intensive care unit where they did his tracheostomy at just 10 week old. He still has no swallow or gag reflex and aspirates often so he will have his tracheostomy for the rest of the short life he has. He has multiple severe complex medical needs and a life limiting condition. He requires 24-7 care from specialist nurses/carers and his parents. Jack has been in and out of hospital and on and off the ventilators his whole life and is a true fighter. Jack has had 3x cardiac arrests in his life and we have had to say our goodbyes to him many times, holding him in our arms. He is such a strong little boy who fights the big fight for life.

Jack is a very inspirational little boy and despite everything he goes through everyday he still loves life. He is a very special and inspirational young boy. He has repeated chest infections roughly every month and blocks his tracheostomy every day requiring emergency intervention due to how severe his secretions and lungs are. He requires a lot of specialist care to keep him alive. His lung is being crushed from his worsening scoliosis and he suffers from low oxygen levels and his heart rate dips overnight requiring emergency intervention. He has had many operations in his life and we have been told he is life limiting and his conditions will take his life. They can’t operate on his spine as they have said he is too poorly and wouldn’t survive the operation. He is known as the miracle child to have survived to the age he has.

Update 16th May 2022 

The last couple of years have been tough with the covid pandemic and lockdown, as it has been for many but having a child with multiple severe complex medical needs on 24-7 palliative care really does make it a whole lot more scary. Last year Jack had an operation to have a jejenostomy tube properly fitted as his stomach doesn’t work properly. In March this year when they were confident the channel to his jejenostomy was well established they sniped the tube and replaced it with a button. 

Jack still continues to get multiple chest infections and coughing up blood which results in more medical interventions to get on top of it as his airway blocks regularly. Jack has worsening scoliosis (curved spine) and as his spine continues to curve his pain increases. It’s starting to crush his lungs. His spinal consultant has said that he doesn’t think Jack would survive the operation to try to straighten his spine so it’s just a case of trying to make him as comfortable as possible now on 24-7 palliative and life limiting care. This is delivered between night nurses and us, his parents. Jack is on pain management which has resulted in him on multiple pain medications to try to ease his discomfort. Sensory sessions like massage, and sensory play can also help depending on the level of pain at the time. Jack loves being pampered and enjoys foot spas, massages to hands, feet and legs and lots of cuddles. He also love it in jacuzzis and even has one in his bath at home. 

We are going through lots of problems with home care as it’s a nationwide struggle to find carers. At the moment he has NHS nurses that come every night to help us so that we can get some rest but even they have to wake us to help when he is poorly and the shifts are sporadic meaning we pick up the shifts with no sleep. Jack is having to be home educated due to no day carers and your gifts have really helped with this so thank you so much. 

We have a new addition to the family! In December we had a baby boy called Thomas and he is absolutely beautiful. Jack loves his new baby brother. Baby Thomas’s entrance to the world was scary as we had all caught covid and were all very poorly. Mum went into early labour due to covid. It was all very scary but luckily both survived. Jack was bad during covid but luckily stayed out of hospital due to his high level of care between us and his night nurses. 

Over the past year Jack has been having a lot of problems with his breathing overnight. We made his respiratory consultant aware as it seemed his airway may have been collapsing whilst asleep. They got a ventilator nurse involved and he had a sleep study at home. His co2 levels were the high level of normal and they did debate whether to increase his pressures on his overnight humidifier to try to force air into his lungs to open the airway more, acting like a ventilator effect. This is still in the process and he is being monitored closely whilst it is sorted. 

Jack got to the point where he stopped sleeping and it was making him exhausted and his breathing even worse so a couple of his consultants came together and started him on a sleep medication. Since being on it his sleep did initially improve however they are reviewing into upping this as his sleep seems to be getting disrupted again. As Jack gets older we see his condition deteriorate and it’s heart breaking but we do try to make everyday happy and as comfortable as we can. Your gifts and cards help him tremendously in this so thank you so much for everything. 

Jack’s anxiety has understandably increased over the past couple of years. He’s always suffered with bad anxiety but recently it’s been so bad he has been pulling his tracheostomy, snapping it and even pulling his gastro and jej  buttons out which causes trauma and emergencies.

Jack loves anything to do with Justin Fletcher, he loves to be pampered, sensory play but no play dough or slime please. Jack is completely nil by mouth. He loves dvds, bright colours, bubbles, Disney, wildlife especially anything to do with  aquarium and tropical fish and animals. He loves wildlife and the world.

*Henry cannot eat, please do not send food*

Story written 2019

Henry was born on 27th July 2015 at just 26 weeks. Henry stayed in hospital for the first 14 months of his life. When Henry came home he needed  oxygen during the day and at night. Henry still requires oxygen at night. Henry has chronic lung disease along with other complications. Henry was diagnosed with a rare genetic condition called Costello Syndrome. Due to this condition Henry is much smaller than other his age. Around 400 people world wide have Costello syndrome. In August 2017 a lump was found in Henry’s testicle, he was diagnosed with Rhabdomyosarcoma stage 1. Henry had this operated on and had chemotherapy, he is remission from this.
In October 2017 Henry was diagnosed with Hepatoblastoma stage 2 but as he had been well for some time it was decided to watch and see. Unfortunately this progressed at earlier this year Henry had a third of his liver removed, had more chemo and is now also in remission from this.
Henry started Pre-school in September 2018, he really enjoyed his time there and made great progress in lots of areas.
Henry is now in reception at school and really enjoys it, he has a small class who moved with him from Pre school along with his teachers.
Henry is such a strong, happy chap who loves going to school, visiting Little Bridge House (Children’s Hospice),  spending time with his friends and family. He has been on such a long journey but he is the strongest most determined little chap we know. 

Update 27th November 2019

Henry had a good start to the month. He spent the first weekend with his carer Rachel. It was Rachel’s nephews birthday, they celebrated by going bowling, Henry joined in and had a lovely time.

Henry’s make a wish arrived, a hot tub. This is going to be fantastic for Henry.

Henry and his mummy enjoyed another restful weekend at Little Bridge House unfortunately the day after returning Henry became unwell. 

Henry was admitted to Bristol children’s hospital on the Monday night, he’s stable but has sadly continued to remain unwell since admission. He had further investigations from cardiology following 2 cardiac arrests, one which was a spontaneous event with no explanation. Thankfully he is in the safest hands and being given exceptional care. 
The decision was made for Henry to have surgery so today (27/11/19) Henry had surgery to fit a pace maker. Surgery went well but Henry was being a little monkey when waking up and had some difficulty so is currently in intensive care. Hopefully tomorrow Henry will come off of the ventilator. Hopefully Henry will have a steady recovery and we will be Exeter bound in the near future.

Update 1st October 2019

Henry has had a good month. He has been going to school full time which he really enjoys. Henry has just had another stay at Little Bridge House, I (Rachel, Henry’s carer ) was able to go with him, this was a really special time. We enjoyed lots of activities together such as the Jacuzzi, messy play, sensory time, walks and music. Henry has made great progress with his communication, he is learning new signs and is able to use  these appropriately. Henry is just getting over a cold at the moment which seems to be lingering but he is coping well with it. Thank you for Henry’s cheery post, he has had some wonderful books this month which we look forward to reading and lovely cuddly toys. A big thank you to everyone. A special thanks must go to Kim , Henry’s monthly pal who send the most lovely thoughtful parcels. 

Update 1st September 2019

Henry has had a lovely summer. He has been out to lots of places with friends and family.  Henry continues to be well (from cancer) although he will always have lots going on for him due to his condition – Costello Syndrome. 

Henry had a lovely last minute stay at Little Bridge House (children’s hospice) due to a cancellation. Whilst there he enjoyed the jacuzzi and snooze Ellen (sensory room) he also liked going for walks outside. 

Henry starts school in September so we also went shopping for uniform and shoes. I look forward to updating you once Henry starts ‘big school’.  Thank you all for Henry’s post.  

Update 29th July 2019

Henry has been well over the last few months. He had his Hickman line removed (due to an infection) but that means he can now go swimming again, which he loves.

We have just celebrated Henry’s 4th birthday, which was fantastic. We stayed in Andover for the weekend and went to Peppa Pig world. Henry has a great day.

Thank you to everyone for Henry’s regular post and birthday post.

Over the summer we plan to have lots of lovely days before Henry starts school in September – so grown up !

Update 15th June 2019

On 14^th May Henry travelled up to Birmingham children’s hospital. On the 15^th he went for his surgery. 
Henry had a third of his liver removed in order to remove the cancer, unfortunately they found that this had spread to the muscle in his diaphragm, so they removed this also. Henry came around with a very impressive scar, he spent a few days in PICU before moving to the ward but unfortunately Henry needed a bit of extra help with his breathing so returned to PICU. 
In true Henry spirit this was not for long and he moved back to the ward again. Henry continued to get stronger each day. Henry found it harder to tolerate feeds after his surgery which is what held his recovery up a little.But on Thursday 30^th May Henry transferred back to Exeter hospital which is much closer to home.

He continued to make great progress, healing well and tolerating more feeds. It was decided that Henry could go home on Monday 3^rd June, just 20 days after a huge surgery andhe went back to pre-school which he loves.
On the Thursday that week Henry had an appointment to go back and see his oncologist for the pathology results of what was removed. We are delighted to share that Henry’s cancer was removed with clear margins even the disease that had spread. This means that Henry is cancer free and is now in remission from both Rhabdomyosarcoma and Hepatic Hepatoblastoma. Henry is truly an incredibly strong child.

Henry has just come back from a lovely week at Little Bridge House. Now the preparation has started on how we will celebrate Henry’s 4^th Birthday.

Thank you for his wonderful post- Henry enjoys looking at it all. 

Update 8th March 2019

On 30th April Henry travelled up to Birmingham Children’s Hospital to have his planned operation to remove the cancer in his liver on 1st May. Unfortunately for Henry and his family, just 15 minutes before going to theatre (all gowned up) Henry’s operation was cancelled due to a family having a transplant call. Amazing for that family, but of course hard for Henry’s family who had prepared for that day and the possible outcomes. Henry came home that day and his operation is now rescheduled for May 15th. Following that very difficult week, Henry had a lovely bank holiday weekend. Spending time with his family and friends. Henry went to the park and on bank holiday went to Crealy adventure park with his friends Arthur and Mabel. Henry enjoyed the rides and feeding the animals

Isabella was a happy and healthy 7 year old girl.

In early March this year she came back home complaining of back pain. I gave her some paracetamol, as the teacher said that she did not fall down or hurt herself. The pain remained for a few days without getting worst or better, then one day when it was snowing in the middle of March, Isabella was unable to walk, the pain in her legs was excruciating. She could not stop screaming. I went to the GP and they agreed to book a visit for an Orthopaedic consultant. Time passed by and Isabella felt worse and worse. She was in such pain that one day she vomited from the pain and at that point I got fed up waiting for a referral and I took her to A&E. Twelve hours later Isabella was diagnosed with ALL (Leukaemia). Two days later she started the standard protocol. After eleven days she was allowed to go home for a few days but after two days she was admitted again and her protocol was changed, as from the cytogenetics it was discovered that she had a sub type of Leukaemia called IAMP21 which was more aggressive and needed stronger treatment. She was therefore moved to Protocol C. Being on the highest protocol our options were reduced, and if the chemo was not working she would have to undergo a bone marrow transplant. However, at the end of Phase 2 in August we were informed that Isabella was reacting and we could carry on with the standard protocol. Isabella is now mainly at home and doing Phase 3 (Capizzi Interim Maintenance). She went back a few half days to school, but she is generally very tired. She lost all her hair and she is very upset about that and she is looking forward to being “herself” again. However, she can now move and she has not been using a wheelchair since July.

Update 20th August 2020

Isabella will be finishing her treatment the 4th of September so she is ready to move on. She is still experiencing some problems in particular due to the amount of weight that she gained during treatment and her bones being weaker than what they should be. We still have a long path ahead of us but hopefully things will continue improving.
Thank you all for the amazing letters, cards and presents, they helped Isabella and Sophie a lot these years especially at the beginning of our journey where the girls struggled to accept the changes in our lives and recently during the long months we could not leave home due to Covid-19. Every times the post arrived there was so much excitement. 
What you do is just amazing xxx

Update 23rd April 2020

Isabella is now less than 5 months away to end of treatment. She is doing ok, and before the Covid-19 crisis she was going to school 3 weeks every month. This is caused by her struggling with her monthly steroids dose. Isabella’s bones have been badly affected by leukaemia first and by the steroids after. 

During her monthly dose of steroids Isabella is unable to walk and she is in terrible pain for around a week. This has been made worst by the fact that Isabella gained a lot of weight in the last year (almost 20 Kg). 

We tried an infusion to strengthen her bones, however the infusion made Isabella badly neutropenic for over 3 weeks forcing us to interrupt her treatment for leukaemia. In order to avoid this in the future, we have now interrupted the infusions and we will restart it once Isabella’s treatment is finished. 

Thank you very much for all the cards/letters/presents that Isabella and Sophie are receiving. This really help during our 12 weeks quarantine.

Update 18th September 2019

Isabella has been okay lately. She finished a very hard, phase 4, part of her treatment Delayed Intensification in January 2019 and she started Maintenance, phase 5, a few weeks later when her numbers recovered. If all goes well, maintenance will last until 04/09/2020. 

After a few weeks of maintenance Isabella was able to return to school part time, slowly building up. In early September she was back full time, however after a few full days, she was admitted to the hospital due to an infection. 

In May, Isabella managed to have her central line removed. This was very important for her, as she developed an allergy to all types of dressing and she was in terrible pain. It was very hard for her because she needed to prove to the medical team, that she will cope with weekly finger pricks and canulas inserted when she needs antibiotics or her monthly chemo dose. So far she has been amazing, coping well with all bloods and canulas. 

She is still not able to start everything that she was able to do before, for instance she cannot go back to cubs, as her immune system is still too low for all the activities involved, but she is going back to some normality. We even managed to go away for a few days on holiday to Scotland and despite Isabella spending most of her time in a wheelchair, as she still struggles walking long distances, she really enjoyed her first holiday since diagnosis last year. 

I would like  to say a big thank you to all people that have sent cards and presents to Isabella and Sophie. Every card represents a smile and I am really grateful for this.

**Ava’s older sister Freya has a severe peanut allergy, please do not send any items containing peanuts to this family**

Story Written 2018

Ava was starved of oxygen around the time of her birth. She was extremely poorly as a newborn and was rushed to intensive care for specialist treatment. Unfortunately, Ava sustained a massive brain injury and suffered lots of seizures. Her prognosis was not good, so on the advice of the hospital we switched off Ava’s life support machine and prepared for her to pass away. However, this determined little girl decided that it wasn’t her time to go and has decided to show the world just how much love and joy she can bring into everyone’s lives.

Due to the brain damage Ava has, she can’t walk, talk, swallow safely or use her body the way it was supposed to. She requires full adult support 24/7. She is fed through a gastrostomy tube into her tummy, is suctioned frequently to remove the saliva from her mouth and airways, and is oxygen dependent.

Ava has fought sepsis three times and has spent time in intensive care due to a twisted colon, which was removed and she lived with a colostomy bag for nine months before surgery successfully rejoined her bowel, and then again for a respiratory arrest.

Ava has lots of medications during the day and often uses a nebuliser to keep her lungs healthy.

Despite all of these problems, Ava is a very happy and sociable little girl who is loved by many.

Update 15th October 2024

Update 28th February 2024

Life for Ava has been very busy.

Over the last 12 months she has had a lot of appointments and assessments.

The biggest thing that changed for us last year was that we moved house. Ava has settled in really well to her new bedroom and can enjoy getting all around the house in her wheelchair and out into the beautiful garden we now have. She’s been loving the birds that visit.

Health wise has been a bit yo-yo. Ava now has her own chest physio vest machine which has been fantastic for keeping her lungs clear of secretions and chest infections have been much milder and treated at home and not in hospital. 

Sadly it was confirmed that after a lot of pain and reduced movement in Ava’s right leg she has a dislocated hip. Unfortunately it is a common occurrence in children with cerebral palsy and we’ve been lucky to have avoided it for so long but now it’s a wait to see if surgery will be an option to have it fixed, as Ava’s dislocation is complicated by her pelvis being twisted due to her dystonia.

Ava is also awaiting an ECG and an Echocardiogram due to some new and unusual heart decelerations during sleep. So will update on that next time.

We have been so grateful and blessed with all the lovely post that has been sent to Ava, Ruby and Millie.

I just wish there was more we could do to say how much of a positive impact each letter makes, you all do so much through your kindness.

Thank you to you all .

Update 25th August 2022

Ava’s health has been a bit like a yo-yo, up one minute, down the next. Mainly chesty respiratory infections. We’ve had a couple of hospital admissions for antibiotics and IVs which helped Ava recover.

Just recently Ava’s undergone a few tests, bloods, X-rays and other assessments as she’s been experiencing a lot of leg pain, they suspect her hip may be slipping out of the socket temporarily before returning to its normal position, so we’re awaiting an orthopaedic review.

Things at home have been a little crazy at times as most of us have been Covid positive, one at a time so it seems to have been a long 3 months with not much recovery in between, the only person not to have caught it yet is Ava which is some kind of miracle!

We’d like to send huge thanks to everyone who has sent post to our girls and supported us over the last 12 months, your cards, letters and gifts have put big smiles on everyone’s faces.

Monthly parcel senders we are hugely grateful for the kindness and commitment you make during the year, we can only apologise for not personally thanking you every time.

Update 26th March 2021

Not much has changed since our last update. Ava recovered well after the antibiotics she needed for the chest infection and remains at home waiting to hear when she can return to school. Finally had my new Lycra suit delivered so hoping that the support that provides will help straighten up my back and shoulders. Thank you for your continued support and lovely letters.

Update 19th February 2021

Ava remained well in shielding and was looking forward to returning to school in September. However, due to restrictions around AGPs and the use of suctioning in school, Ava’s return to school was delayed until November. Sadly then she developed two infections in her gastrostomy/tube feeding site on her tummy and ended up being admitted to hospital due to some complications the antibiotics had on her digestive system. 

However she recovered quickly and made it back to school on a part-time basis for two and half weeks just before the Christmas holidays, she had so much fun! 

We enjoyed a quiet Christmas at home, and thanks to going back into lockdown, Ava’s had to remain at home and recommence virtual learning with school. 

Lately, after a respite stay at the children’s hospice, we’d noticed Ava wasn’t quite herself and was needing more breathing support and chest physio to clear her secretions and test results shown that she is fighting a bacterial infection, so we’re just about to start a course of antibiotics.

We would like to say a million thank you’s for the fantastic post and gifts Ava, Ruby and Freya have received.

Your little hello’s, your wonderful letters have brought us so much happiness in such unusual and difficult times. 

Update 20th August 2020

Ava has been reasonably healthy lately. With the whole family in lockdown we were able to stop a lot of bugs coming into the house and this has had a huge benefit on Ava’s general health. 

She had a hospital admission in February where she received IV antibiotics for a chest infection. We work really hard on her chest therapy and nebuliser routine to keep her lungs as healthy as possible. 

We’ve had a few “virtual” appointments due to shielding and being in lockdown. Since restrictions have lifted, we’re still being extremely careful as Ava’s respiratory system is so vulnerable, we need to protect her as much as possible now before winter germs/viruses reappear. 

So we have exhausted our Disney DVD collection and busy ourselves at home, but when we start getting a bit claustrophobic we venture to the grandparents house and enjoy some fresh air in the safety of their garden.

Update 7th July 2020

What a strange few months we’ve had! Lockdown has been a very different experience for us all, however we’ve stayed safe and Ava has been really well.

I think the slower way of life and little exposure to every day germs has done her the world of good. It’s been quite a challenge to try to complete Ava’s care/therapy needs, along with her home schooling and her sisters homeschooling schedules too. Our days got very busy, very hectic and we felt completely overwhelmed with it all, so had to slow things down and not stress about what wasn’t finished. 

Due to shielding Ava, we were lucky to have a small garden to enjoy some sunshine and fresh air so didn’t feel completely trapped inside the house. 

We still can’t believe that our amazing girl turned 10! It was a huge milestone we never thought we would see. 

Ava celebrated with lots of Frozen 2 decorations and cake. It was a totally different day to what we had originally planned, so hopefully we can make up for it with a big party next year. Huge thanks to everyone that sent Ava a birthday card and/or gift. It’s so very thoughtful and we feel very humbled that so many people cared and sent best wishes in her direction.

I must apologise for the lack of personal thank you’s to each individual because since Ava’s birthday we welcomed a new baby girl into our family and our days have been busy on a different level. Girl number 4!! Millie Faith is adored by all her big sisters and has now completed our family. Ava spends lots of time looking, smelling and having a feel/cuddle with Millie. 

Much love and a huge thank you again to everyone who sends post in our direction. The girls really appreciate the kindness and gives them a much needed boost.

Update 27th November 2019

Ava had surgery on her tummy to remove a surgical mesh used to hold her bowels inside her abdomen (after surgery in 2016). She did absolutely amazingly well to recover so quickly after the operation, but sadly her incision opened and we’ve had to dress it daily for the last 4 weeks to get it to heal. All this time off school recovering but hoping to return back part time in December to enjoy some of the fun before Christmas holidays begin. 

A big temperature spike (20th Nov) in the middle of the night caused Ava to have a big seizure, and as predicted wouldn’t stop after her rescue medication so we had to call 999. After a fabulous check over by the paramedics and a few phone calls to the children’s ward, we were able to keep Ava home, safe in her own bed to recover, and she’s been fine since! 

We have some lovely Christmas events coming up so will let you know how those go soon!  Ava, Ruby and Freya have continued to receive such wonderful monthly projects, each gift has been perfect and you know are girls so well. 

Thank you Narelle, Amy and Tasmin for your kindness and generosity. 

Big shout out and thanks to Becky B for the continued amazing Disney postcards. They really do cheer Ava up and we love finding out what you’ve been up to. 

And to each and everyone for the continued support and love. 

Ellie E for the lovely photos of your pets, and little bits that you send each month.

Rebecca F for the most delicious hand cream.

Kayte for the handmade bracelets

Thanks you to everyone who sent Sainsbury’s cards. 

To the Girl Guides who created Ava the most incredible super hero cape and story. It was fantastic!!

Sally Plummer for Ruby’s lol watch and balloon 

Bev for Ruby’s flower fairy pot and book

Emma  for the emojis

Narelle for Ruby’s  barbies and ty beanies

Albie Lockie from NZ for the lovely letter/ origami butterfly/scratch and sniff stickers.  Ava thought it was very funny that your dog was trying to stand on her letter

Emma Hendriks from NZ for the post with Disney quotes. 

Dottie mail

You’re all amazing !!!! 

Update 1st October 2019

Thank you everyone for the continued support in the lovely post we have received recently, the excitement certainly hasn’t worn off yet! 

Extra special thanks to, Becky B, Narelle, Tasmin,  Amy, Ellie E, Geraldine, Beverley, Audrey, Tashja Victoria and to GIK for the amazing box of Disney goodies!  Dottie the Dalmation, Tales of Mr G, to those who have kindly sent Disney Pixar cards from Sainsbury’s, and M&S little shoppers, we can’t thank you enough. 

Also a massive thanks to everyone who donated for Pals to receive a Wheelchair Barbie, it’s the most played with toy this past two weeks by everyone who’s been to visit us! Ruby absolutely loves her. 

Ava’s health hasn’t been too bad, in complexly needs terms, however after a few weeks of mystery symptoms and episodes we found out that she had grown a nasty group C Streptococcus bacteria on her chest. So we’ve had to up her chest physio routine at times, and given a few courses of antibiotics, which then has consequences of its own with her already delicate bowels/ digestive system! 

Really hoping that we manage to get on top of it soon before the horrible winter germs appear and compromise her even more.

We’ve also been monitoring her abdomen scar for a couple of months as it looked like a blister had developed, her surgeon suggested at first sight that it could possibly be a stitch sinus, which is very common for people who have surgical mesh, that an internal stitch irritates from within, and that once the skin opened, could be snipped and re-healed. Simple right?! However nothing is ever that simple in Ava’s world, the area has continued to increase in size, colour and appears to almost look like the mesh is being rejected, with the skin becoming very delicate and weepy. So having to be very sterile in that area now and hoping that infection doesn’t take hold. 

Update 7th March 2019

Since joining Post Pals we have been so lucky to receive the most amazing post. Every piece is read and truly appreciated. It has made such a difference in the girls’ mental health to know people think about them and really care. I don’t think we’ve ever seen them smile so much!

Huge heartfelt thanks go to:
Becky B – your postcards are just divine.
Victoria for the Valentine’s balloons and post.
Dottie the Dalmatian for my new teddy friend we’ve named Winter and your picture updates.
Fiona and Andy for the postcards.
Narelle for the most Ava appropriate monthly parcels.
Tasmin for Ruby’s monthly parcel. We loved the pictures of your dogs Sophie and Sapphire. We have a little dog called Bruiser. He’s almost 8 years old and is a Chorkie.
Audrey you sent the most wonderful Christmas book from NZ and recent postcard.
Amy G for Freya’s monthly parcel, she’s been meaning to write a thank you back but has had a huge increase in homework since starting year 9 at school.
Emma, Geraldine, Anna, Bear Hugs and Project Parent for your post and gifts.                                                                                                                            And to everyone else I’m bound to have forgotten including scout, beaver, brownies guide and school/college groups, your post has been wonderfully uplifting.

Ava has probably had one of her best winters ever in terms of her health!
Her Dad and I have worked extremely hard on keeping her chest as healthy as possible with strict physio, antibiotic nebuliser treatment and deep suctioning routine which was a success. She remains continuously on oxygen but only on a small amount, which for winter is fantastic.
Seizures aren’t usually too troublesome for Ava, but unfortunately we had one episode of her emergency buccolam medication not stopping the seizure, so we had to call 999 and ended up with a hospital visit.
This week Ava didn’t cope very well with one of the viral infections going about so ended up with another hospital trip and course of antibiotics, but she’s recovering well.

Ava attends a local special needs school. She absolutely loves being with her peers and thrives in the classroom when well. She’s learning to communicate on an eye gaze machine that she controls with her eyes. This technology is fantastic at allowing someone who cannot control any of their body movements the chance to speak.
We’ve had many appointments over the last two months: a respiratory review with a consultant at Addenbrokes, and a physio review where Ava has been measured up for her new Lycra suit and gloves. Once wearing these items she will be known as “Ava the incredible” as she’ll look like another member of the “Incredibles” family (Disney).

Sadly we had to say goodbye to Ava’s Great-Grandad as he passed away on New Years Eve, just a few months before his 90th birthday.
Ruby too has been busy, she’s been having regular hearing tests for the past year as she has hearing loss in her left ear. She finally had her hearing aid fitted and has coped amazingly with it and it’s made such a difference in her hearing!