Jackson H

26 March 2021

Story Written 2021

Jackson is currently undergoing treatment for T-Cell Acute Lymphoblastic Leukaemia. Diagnosed in February 2020, Jackson has been through quite some journey. After initial diagnosis he picked up some viral infections in March and also tested positive for Covid-19 in April 2020. Jackson presented with a rash on his chest, belly and top of his legs. We kept an eye on it for a day but it didn’t seem to be getting better. After we did the tumbler test and the rash didn’t disappear we took him to A&E where they done some blood tests. It was then we were told the devastating news that Jackson has Leukaemia – other than the rash Jackson was healthy and his usual self. The rash is known Petechiae. During the the last 11 months since diagnosis Jackson has been through so much. He was very ill in March last year and has a fungal lung infection which he is still receiving treatment for and will be until the end of treatment in 2023. Maintenance had a bumpy start, In October he had positive blood cultures, a bacterial infection in his blood called Pseudomonas Moraxella which took 11 days of antibiotics to clear. At the beginning of December he had an eye infection which landed him in hospital with IV antibiotics. And on New Years Eve he got a temperature with an ear infection luckily they sent him home a few hours later with oral antibiotics. Jacksons big sister Ava hasn’t had the best time since Jackson’s diagnosis, she started getting panic attacks and getting upset about death, we took her to see the hospital psychologist and she received art therapy to help. It has got slightly better but she still has moments of sadness especially with the pandemic still looming over us. Despite all Jackson’s been through he still manages to have a lovely smile on his face and we hope this continues through treatment until 2023 when he will ring that bell.

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Elliot K

19 March 2021

Story Written 2021

Just before Christmas 2020 Elliot was diagnosed with leukemia! Already having other lifelong issues that affect all areas of his life, this is the last thing he needed.

Elliot was born in the summer of 2007. From the start he had trouble feeding and it soon became apparent that his physical development was not what it should be. After several years of back and forwards to the GP he was diagnosed with Ehlers-Danlos Syndrome which meant his muscles were weak and his joints were hyper-mobile. He was also diagnosed with neuromuscular involvement with his muscle problems. As time went by we found him to be dyslexic too which impacts his learning. Also, he was diagnosed with ASD so now his problems covered pretty much every aspect of his life and development.

As he has grown his muscle tone has deteriorated and he began to use a wheelchair to cover any distance and use postural support setting at school. Eventually we managed to get funding for a powered wheelchair and invested in a wheelchair accessible vehicle so he could be more independent, and we could fully enjoy our family time and trips away.

Of course this became increasingly limited against the background of the COVID-19 pandemic. But everything was in place to make his teenage years easier for him and for us as a family.

Then Elliot developed an unusual swelling around his face. With treatment it went but then it came back along with a rash on his legs. This time we got the hospital to review him and the results of the test shook us to our core. Leukemia! Elliot never gets a break. So now he is undergoing chemotherapy, enduring multiple hospital admissions due to neutropenic infection where he is isolated from his siblings due to the COVID risk and facing further physical debilitation as the chemotherapy takes its toll on his body.

His schooling is almost completely on hold apart from the days he feels well enough to concentrate on an online lesson.

So this is where we are now. Awaiting his immune system to recover enough to undergo another round of chemotherapy and with a further three years of therapy to come. The treatment and being away from home is also having a huge impact on his brother Oliver who is 14, and his sister Emily who is 11. They miss him and having the family home together, they also worry about him a lot.

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Emily M

03 November 2020

Please do not send food or drink to Emily

Story written 2020

Emily was diagnosed during pregnancy with severe heart complications. She was born locally but taken to GOSH for surgery after birth. Emily stayed at GOSH until she was 3 months old, when they then estimated she had possibly 48 hours left. Emily was transferred to our local hospital so she could die surrounded by her family. This is where I step in. I am Emily’s second cousin, her Mum is my cousin but she found it difficult to care for Emily. After Emily was transferred home to our local hospital she managed to stabilize but was still given only a few weeks left. The hospital couldn’t keep her there forever and her Mum couldn’t face taking Emily home to die. Social services got involved as expected. They were looking at placing Emily into specialised foster care which could have been anywhere in the UK. I was in a position to have Emily with me so I offered her a home. I didn’t want her to be away from family and I knew it would be difficult but Emily didn’t ask for this life and deserves love and a home. I brought Emily home on 1st August 2017. I was told she may only have a few weeks. As you can see she is still fighting and proving the doctors wrong. I have a special guardianship order for Emily and as far as anyone needs to know she is my daughter and I am her Mumma.

Emily still sees her birth Mum but not Dad. My own 4 children have brought Emily into their hearts. She is their baby sister. Emily has a whole list of medical conditions. Many feel she has Fraser Syndrome but only genetic testing will confirm this and birth mum will not have the test done. Emily is blind but this does not stop her. She is like any other 3 year old, she has tantrums and knows what she wants.

GOSH have concluded that Emily’s heart is too unstable for any further operations. So she is unfortunately terminal and we live day to day. Emily has a lot of urinary/bowel issues which often lead to UTI infections which can make her very poorly. She has been NG tube fed since birth and cannot take food orally. She has medications to help her condition.

Emily is an amazing little girl who has opened up this whole new world to me and made me realise we all just need to love and spend time together. I know I will lose Emily but at the moment we are blessed with each day that she is here.

Update 5th February 2021

Emily currently in pain with infection in her baha abundment and will need surgery to remove skin. 

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Sadie S

22 August 2020

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 2nd March 2021

Sadie is now home from hospital with her ileostomy, gastrostomy and hickman 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.

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Imogen R

22 August 2020

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!)

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Nimrit K

22 August 2020

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 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.

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Harry P

20 April 2020

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 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 was able to control 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

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Rueben W

11 December 2019

*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

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Amelia B

01 September 2019

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 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.

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Jack K

28 August 2019

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. 

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