Tona was diagnosed with Hodgkin’s Lymphoma in October 2019 at age 14. She went through the first 6 months of treatment with relatively few side effects and went into remission. Sadly within 4 months she relapsed and had to have stronger chemo which made her hair fall out for the second time as well as making her much more tired and nauseous. Once no signs of cancer was detected Tona had a stem cell transplant to raise her chances of remaining in remission. Sadly; due to the intensity of chemo given before a stem cell transplant; Tona’s gut shut down and she also suffered a septic episode. She did recover from this and came home. She was still tube fed, having digestive issues and quite weak but enjoyed 5 weeks at home. Tona then caught salmonella from an unknown source and her already sensitive gut just shut down. She was admitted to hospital and also found to have a line infection. Despite antibiotics, within a week Tona developed sepsis and needed retrieving to the most local PICU to be stabilised.

Since this time (May 2021) Tona has not had a night home. After several attempts to re try feeding and several more septic episodes; Tona was able to come back to our local hospital on TPN which is nutrition into her bloodstream. Tona still has frequent episodes of septsis and has very few areas of access left in her body. 

Due to limited chances of being able to get her gut to work again without significant trauma and high risk; Tona has chosen not to pursue this and instead enjoy the time she has left with her family and friends making memories and then returning to the hospital each day for nutrition and medication.

Update 29th December 2025

We would like to thank Post Pals for all their support since Tona went on end of life care, and then for her siblings after Tona passed soon after. We particularly want to thank you for supporting Tink, even though she is much older. After chatting with her, we all feel that after this Christmas she no longer needs this support, and she would prefer another young person to receive the support that she has been able to have. She is ready to move on.

Rory still really, really looks forward to receiving post from “his friend Joyce” and the postcards from his other Post Pals family. He is also still finding many areas of life tricky. So for now, if possible, he could really use his regular monthly Post Pals interactions.

Thank you to everyone at Post Pals.

Update 18th November 2024

Tink and Rory have had a better year, although they still both suffer from anxiety and trauma related behaviours from what they’ve been through. Tink has enjoyed college and loved attending her college prom and various activities put on by her disability group. Rory has been in a theatre show and really enjoyed it and has grown in confidence. He had to sing and dance and had a solo speaking part. He still really struggles at night but is managing a few hours sleep each night in his own bed.

Both children enjoyed our big trip to Canada. We had a great adventure and made a lot of fabulous memories. Tona would have loved it too and we bought small souvenirs in each place we went to that we thought she would have liked.

Hoping the next year will continue to bring them healing and peace to grow in themselves and that Tink’s health continues to be stable.

Thanks so much for all of the gifts and cards that the children receive. They continue to get so excited when they see a parcel or letter addressed to them. Rory calls his regular senders ‘my friends’ and talks about them like he knows them to others.

Rory loves animals, hot wheels, Lego, theatre/musicals and Disney.

Tink loves Princesses and Disney Descendants. Pink and sparkly thing an musical theatre and Disney.

Update 28th February 2024

The children are doing well following the loss of their sister, however they are still recovering from the absence of their mum while she was in the hospital  with Tona and having to be so grown up and go without for so long. 

They still get so excited by their post; particularly from their monthly senders who they know by name and love to hear about their lives and what they send. 

Tink’s interests are largely unchanged. She herself has many health conditions and learning disabilities which means she spends a lot of time  at hospital appointments or at home. She watches a lot of films and Disney tv, young teen stuff, musicals and still loves all things Disney. 

Rory still loves hot wheels and Lego but also anything science based. 

They both say a massive Thankyou for their post over the last two years and really benefit from feeling that someone is thinking of them

Update 16th of August 2022

Thank you to everyone for the children’s post. It has brought them a lot of comfort and smiles to still be able to open letters and presents. Any post that Tona was unable to use or arrived after she died was donated to our local children’s hospital. She spent over a year there and it was often difficult for them to find age appropriate presents for her. These will hopefully put smiles on many more teenage girls faces.

Update 5th of August 2022

Sadly Tona passed away peacefully in the night. She was surrounded by her family and appeared both free of pain and relaxed.

Please keep sending cheerful post to Rory and Tink, keep it light hearted as you would for any child.

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

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

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

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

Anoosha has been in hospital for a long time.

Update 25th October 2024

Azaan likes Marvel, super heros, Luton Town FC and musical instruments. 

Arzoo likes Manchester United, make up and Spiderman.

Update 22nd December 2022

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

Update 4th October 2022

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

Update 24th March 2022

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

Anoosha remains her smiley, cheeky self and is thriving.

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

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

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

Update 4th June 2021

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

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

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

Update 2nd June 2021

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

Update 2nd June 2021

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

Update 21st August 2020

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

Update 1st October 2019

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

Update 3rd April 2019

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

She is waiting to start immunoglobulin treatment.

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

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

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

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

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

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

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

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

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

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

Update 24th August 2020

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update 4th October 2019

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

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

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

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

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

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

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

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

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

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

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

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

Thank you Post Pals for all your support

Update 14th April 2019

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update 9th September 2018

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

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

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

Story Written 2015

Rocco is 5 years old and has spent most of his life in hospital. He has been fed by TPN (total parental nutrition) since he was 9 months old. He is very complex and has intestine failure with no immunity, as well as this he has bone marrow dysplasia, hypopituitarism, hypothyroidism and hypoglycaemia.

In August 2014 Rocco had a multivisceral transplant (liver, intestine and pancreas). Unfortunately he has been in and out of hospital since due to multiple complications, which have resulted in PICU stays, and he is currently in HDU.

Despite all this Rocco is a smiley little boy who loves spending time with his sister Olivia and playing on his iPad.

Update 20th April 2020

Olivia is now 14 and loves receiving post from Post Pals.  She loves beauty , Disney , Dancing and loves anything to do with hair. Her passion is cooking. She told me when she grows up she would like to own her own dance school and also become a chef

Update 19th January 2016

Sadly Rocco passed away peacefully with his Mum by his side.

Please keep sending cheerful post to his sister Olivia.

Update 11th January 2016
Rocco really enjoyed the post he was sent. Sadly on Christmas Eve Rocco deteriorated and had to be moved back to intensive care. His family have since saved his post as he hasn’t woken up. Olivia is finding the post she has been sent helpful at such a difficult time for the whole family

Story written 2015

In October 2006 Holly went into our local hospital with an UTI infection and the last 9 years seem to have had the snowball effect, as Holly now finds herself not able to eat and TPN dependent. Holly has chronic intestinal pseudo obstruction and intestinal failure, amongst other issues, and there is no cure for the conditions she has, so we have to try give Holly the best quality of life and minimise her symptoms and pain. However, in doing this, it has meant Holly has had to undergo numerous trips to theatre, stays in hospital and invasive tests.

Holly has a Hickman line; this delivers the TPN straight to her heart. She’s attached to a pump which infuses all the nutrients and vitamins that she needs to grow over 14 hours a day. Holly’s digestive system is failing; she is unable to eat and is only allowed a couple of mouthful of dissolvable food a day. Any more and her digestive system will shut down and Holly will be in a lot of pain and discomfort. The Hickman line can cause serious life threatening line infections, any temperatures over 38.5 means Holly has to be admitted to our local hospital and IV antibiotics started as soon as possible. This is currently happening on a monthly basis.

Holly has a J-Peg feeding tube inserted into her stomach and small intestine. Holly’s stomach remains on drainage, this is to help with pain and to aspirate any fluids that may be sitting in her stomach and causing her reflux/nausea/sickness and pain. The jeg tube is there for me to administer the daily medication that Holly needs.

In 2011 Holly had a Mitrofanoff formed using her appendix, one end is attached to her bladder and the other end to her stomach, we pass a thin tube every two hours down this channel to empty Holly’s bladder. Her bladder has no nerve or muscle control at all. During the night due to the large volume of TPN being administered, Holly has a tube taped in place to keep the bladder empty. Holly has suffered with repeated monthly UTIs which has taken its toll on her kidneys. Her right kidney now only has 18% function left and this will be removed once we get to 15%.

In 2013 Holly had a ileostomy formed, this is where the end of the small intestines is brought to the stomach wall and it’s covered with a bag to collect all the waste products. Holly’s large intestine has failed completely and in the near future Holly will have surgery to have this removed.

Holly has very complex medical needs, she has had far too many hospital admissions, invasive procedures, and days where she just cannot get out of bed. Holly is currently struggling to make it in to school.

Update 15th February 2017

I have spoken to Holly, and as she turns 14 in March she is more than happy to move on from Post Pals and allow other children to be part of this amazing charity like she was.

We would like to thank everyone involved in Post Pals for all of the support and generosity that has been given to us whilst Holly was a Pal.

Update 3rd May 2016

Holly really has not been feeling very well after her last infections and the decision has been made to bring her colectomy forward to this coming Friday. She will be in hospital for some time while recovering.

Update 24th February 2016

Holly has had a tough few months battling infection after infection, sometimes only going 4 days between the end of Ivab treatment before starting the next course of Ivabs. Her team at GOSH will be holding a meeting this week to decide what the next steps are. Holly needs to either have a total Colectomy performed or another stoma formed. Both of these options mean Surgery and a lengthy stay in hospital for Holly. Hopefully by the end of this week we will be told which surgery Holly will be having.

Holly would like to thank Mathew and his mum for the lovely Yellow themed monthly project parcel that she received.

Update 28th January 2016

Holly had a tough month of December battling infection after infection, she needed to have almost continuous IVABs to keep these under control. We now have an appointment with Surgeons at GOSH next week regarding a Colectomy for Holly. They believe her Colon could be the cause of all the infections she is continuously having.

Early January after nearly a year of planning, Holly and  I travelled to San Francisco to meet some Doctors, in the hope that they may have different treatment options or help with a solid diagnosis for Holly.
This was our first time travelling since commencing TPN, it was a rather stressful trip and by no means a Holiday!!! But Holly thankfully remained infection free our few days there.

Holly fell in love with Chinatown there and the huge amount of POPs that they had!!

Update 5th July 2015

Holly was well enough to finally go and visit the pandas at Edinburgh Zoo this month, a trip that has been postponed for the last two years due to Holly’s health. She really enjoyed her visit and actually saw Yang Guang (the male panda) laying down in his enclosure. Unfortunately Tian Tian was feeling lazy on the day of the visit and didn’t come out to see us.

Holly has just started some home schooling (3 hours per week) and we are hoping that Holly may be strong enough to do a few more hours at the start of term in September.

Holly has been overwhelmed with the cards/letters and gifts that have been sent to her during her fist month on Post Pals and each and every one of them has put a smile on her face.

**Please do not send Isla food items**

Story written 2015

Isla is yet to be diagnosed properly. Since the age of one, Isla has been unfeedable and is totally TPN dependant. TPN is artificial feeding through a main vein next to the heart through a central line. Isla has inflammation of her bowel which had left her unable to be fed. Isla has not responded to treatment for this. She also has a large bowel that doesn’t work properly so has an ileostomy.

Isla suffers from lots of infections due to bad bacteria and spends a lot of time in and out of hospital. Isla suffers from kidney problems which have started this year and again are yet to be diagnosed. She often gets urine infections as well as line infections which leave her very poorly.

We don’t have a long term plan for Isla as yet but we are hoping that doctors will be able to do this for her soon.

Update 9th July 2026

Isla is currently having treatment for her new diagnosis of osteoporosis. She has several spinal fractures so her mobility has reduced significantly because of this.

The intestinal failure side of things she is 18 hrs PN, bloods monitored regular due to her electrolytes being affected. We make changes as and when she needs them.

Kidneys are also being monitored closely, the nephrocalcinosis is stable, the function is ok.

Liver – touching wood has improved.

Update 9th November 2025

Isla’s interests have been updated

Update 3rd February 2024

Isla is an Ariana Grande and Taylor Swift fan. Isla likes hair and makeup, pandas and fluffy socks.

Health wise – she’s coping well, we have regular bouts of pain but is managed at home. Mobility wise she’s able to get around more now since her leg operation but she has a significant amount of falls so is a bit vulnerable. She has a 1:1 at school and is on a reduced timetable and is coping as well as she can do .

She is currently having antibiotics for another bug growing around her gastrostomy site. She needs regular IV iron infusions and vitamin D injections as she is still unable to manage her levels herself.

Update 25th March 2022

Isla has a few complications going on at that moment that is stopping her from going to school.

She has a kink In her ileostomy that is stopping her output, when she gets backed up she suffers pain and sickness, the frequency is increasing, she waiting for a stoma reconstruction.

She is also waiting for surgery (now at GOSH) for a double leg Achilles heel tendon surgery, once she has this operation she will be in a plaster cast for a minimum of 6 weeks in both legs. This is so tough but hopefully, the surgery will improve her mobility.

Isla has finally been referred to haematology for her neutropenia, she is having some genetic blood investigations in the next few weeks.

Update 21st June 2021

Isla is still pretty Plateau with her health as she is still unable to go to school. She is waiting for her legs to be put into plaster casts due to the muscles in her legs have got to tight and she is unable to walk flat- footed

Isla also continues to have an on going Candida infection in her stomach and around her gastrostomy device, she is back on treatment and due to have a new device inserted under GA this month.

Update 20th August 2020

Isla has been doing better since having her large bowel removed in March 2019. She still suffers from daily pain, still has ongoing issues with her kidneys (nephrocalcinosis) this causes a lot of pain.

But she’s so much happier then she was. She doesn’t have to spend so much time in hospital. Although she is still TPN dependant she is thriving. We manage the bad days well and enjoy her good days.

Update 20th April 2020

Isla is having a few issues with an ongoing bacteria overgrowth, she is waiting an admission to GOSH but due to the current covid-19 it’s too unsafe. She will be having a brand new gastrostomy new device fitted and IV  treatment.

Update 28th November 2019

Isla is doing relatively well, she is managing half days at school but it has highlighted how bad her mobility is so the school have referred her to occupational therapy to see if they can help. She is still on treatment for the ongoing Candida infection around her gastrostomy, even after a new tube was placed it hasn’t shifted. She is also having flair ups of bladder pain so she will be reviewed by her urology team soon to see if they can help. Considering how poorly Isla was this time last year she is doing amazingly well. She’s loving school and she’s enjoying doing all this things she has up to now missed out on. Hopefully this will continue

Update 10th August 2019

Since Isla’s surgery in March she has been doing really well. She is spending more time out of bed, she has more energy and she is a lot happier. We’ve been on holiday and she’s even going to start integrating back into school in September. Isla being more active has highlighted how poor her mobility is, her legs give way a lot and she can’t walk very far anymore. The school highlighted this and will be doing necessary referrals. Isla also is struggling to shift a Candida infection on her gastrostomy site, it’s an ongoing problem and one we never get on top of. She is listed for a new peg site which hopefully will help.She is due to go into GOSH in the next few months for some tests on her small bowel. We now know Isla has a myopathic nerve disease in her bowel. Her large bowel that was removed in March was sent off to histology and was discovered that too had the same problem, along with diversion colitis.

Update 21st March 2019

Isla has just got home from 2 weeks in Great Ormond Street Hospital after having big surgery to remove her large bowel. She will continue her recovery at home. We are having issues with her larger wound that won’t heal and is weeping and bleeding still. She is also getting awful intermittent cramps in her lower abdomen.

Update 14th February 2019

Isla’s recent biopsy results showed pancolitis which means her entire large bowel is inflamed. There is also active inflammation in her small bowel, and ulcers on her oesophagus and stomach. She has been on high dose steroids since Christmas and is responding well. She’s just feeling a little bit down because they have made her put on weight and she doesn’t like the moon shape face they give her.

Isla is booked into have surgery at GOSH in early March to remove her large bowel.

Update 1st November 2018

 Isla has been on a roller-coaster regarding her health. She recently has a serious line sepsis that involved the paediatric cats team being called out to her twice. She is still suffering with pain and lethargy. She is now under 5 teams at gosh as she has reoccurring urine infections and a low score bone mineral density. We don’t really have a plan at the moment for how to move forward health wise, we just take each day as it comes.

Update 25th February 2018

Isla has had a really tough few months. She has an ongoing Candida infection that she needs to keep having IV antifungals for. Isla’s recent admission to GOSH for scopes revealed severe inflammation of her large bowel and after the procedure haemorrhaged and lost a lot of blood. Plans are being made to admit her for surgery and have a total colectomy.

Endocrine tests revealed an hormone deficiency so further tests are being planned to investigate further.

She’s been spending more and more time in bed, feeling unwell and pain levels increasing. It’s really hard to motivate her to do the things she once loved despite us trying so hard.

Update 3rd October 2017

Isla has been struggling with an ongoing line site and gastrostomy infection and has been on iv antibiotics for over a month. Unfortunately it’s been decided that she will need to lose this Hickman line and a new one will be inserted. Isla also has a weeks admission middle of October with the endocrine team at GOSH.

Update 21st August 2017

Islas still having a tough time with pain, hypoglycaemia episodes. She has a few admissions coming up to try and get her sorted. Surgeon’s appointment is also coming up to discuss the procedure of removing her colon. Still waiting  for a plan for management of the deterioration of her liver

Update 5th June 2017

Isla’s had a yo-yo few months, she has been fighting an ongoing pseudomonas infection of her line site which once treated with IVABS comes back within weeks. She has been fitted for splints for her legs as unfortunately her mobility has deteriorated so will need the splints to help with the muscles of her legs. She was referred to Kings College hospital from GOSH for her liver, as the bloods show increase in liver function is really abnormal now and needs to be managed by a specialist. Her appointment at Kings went well, lots of bloods taken and just today received further bad news, that the bloods have doubled so she will need to be admitted to GOSH for a liver biopsy. Her manometry results show that her colon has completely failed and it has been decided that this year Isla will need surgery to have it removed.

Update 2nd March 2017

Isla’s not had a great month. News from GOSH was that her colon has stopped working completely. We have a date to meet jointly with her motility & surgeon to discuss surgery to have the large bowel removed.

She’s also been down on her health. She has grown a bug around her line site and is on iv antibiotics, but we are struggling to clear it. It has also been revealed that’s Isla’s liver function has  trebled what it should be. Despite all this she is still happy & smiling just a bit more tired and sensitive and needing lots of mummy time.

Update 4th January 2017

Isla has had a really good month health wise. She hasn’t needed any hospital admissions and we have managed her at home. She’s due to go to GOSH in February to get the results of all the gruesome tests she had done in October/November. She’s had to have her immune suppression medication increased due to increased inflammation in her small bowel and the levels showing low in her bloods, although this hasn’t stopped her from enjoying her Christmas.

Update 4th November 2016

Isla has had a really rough October and the majority of it has been spent in hospital. She was admitted for a planned stay at GOSH for an ADM manometry and unfortunately that took a while to recover from. We were home a few days and then she was taken into our local hospital with a high temperature which ended up being because of her diversion colitis. She was needing IV fluids as her stoma output was so high. We then got transferred to GOSH again, who did emergency scopes and a clonic manometry. Unfortunately, Isla suffered too much pain with the manometry and it had to be a stopped, with fears they had perforated her bowel, due to a pocket of air seen on her x-ray (luckily it wasn’t). The pain she experienced was so traumatic that even the consultants gave her cuddles and had tears in their eyes.

Discovery from her colonoscopy has shown Isla has a stricture (a narrowing) in her colon, so we are currently waiting another admission to plan what they are going to do with this and also make a decision on whether she will need the big surgery to remove her colon.

All Isla’s medications have been upped as bloods show she isn’t absorbing as well as she should, one of these meds is her immunosuppressives so we are expecting a few more blips with her health over the near future.

Update 13th September 2016

Isla has had a busy month, she was due for her admission to GOSH, but unfortunately due to her inflammation flair up it has been delayed. Instead Isla will be admitted in October for scopes, and a repeat bowel manometry tests under the guidance of the motility team.

Update 7th August 2016

Isla has had a rocky month. She’s suffering from diversion colitis and a gastrostomy infection that won’t shift. Her inflammation markers are sky high, but until her admission in September, unfortunately she just has to ride it out until then. Isla’s on all the correct medication, immunosuppressives and has done a course of steroids, but unfortunately it doesn’t look like she’s absorbing. Tomorrow IV antibiotics are being started and hopefully we’ll get some stability back. She’s coping well and we are distracting her the best we can.

Update 7th July 2016

Isla has had a great month. She’s still got ongoing diversion colitis, but she is handling it really well. Had her admission date for GOSH, which is September, if she doesn’t fall too poorly before then.

Update 2nd June 2016

Isla has remained out of hospital, but remains in a vicious cycle of bacteria overgrowth and inflammation/ulceration. She’s finding it difficult to keep her strength up again, and slowly slipping back into sleeping most of the day. She’s been retching and being sick due to her reflux and generally not her happy self.

GOSH has kept to their agreement of letting her be at home for 3 months without any hospital admissions, but the end of the 3 months is fast approaching.

Update 5th April 2016

Isla has generally been quite well. She’s had her new Hickman line inserted and some other tests for her yearly TPN MOT. She’s being treated for bacterial overgrowth and is now on an antibiotic and probiotic cycle, hopefully this will improve some of the horrible symptoms she’s been having.

Update 14th March 2016

Isla has had a pretty stable month. Scopes were finally done. This shows that the colon is still inflamed and also her tummy is still inflamed and ulcerated. The motility team want Isla admitted to GOSH again, under their guidance, to try and get things stable for home life and for some investigations (another lengthy stay)

Update 6th February 2016

Isla spent the first part of this year in hospital with viral pneumonia and a line infection. She has grown some very rare bugs and they took their time to shift, but we got there eventually.

Isla just managed to be well enough to have her scopes done, which we needed to beable to progress on with a plan for the rest of the year. She’s very up and down in health and we literally take it day by day. She will be admitted to GOSH again soon for repeat investigations and possibly big surgery to remove her colon.

Update 3rd January 2016

Isla is currently in hospital and has been since the 29th December, she is very poorly again and are waiting to transfer her over to GOSH. She has been suffering with high temperatures for the whole time she’s been in hospital and the team are trying their hardest to keep her out of PICU, till GOSH can take over her care, when a bed becomes available.

Update 2nd December 2015

Isla has still had an up and down month. The candida infection has left her very frail and weak. She’s been assessed for a wheelchair and one has been specially made for her to carry all her medical equipment for her, as she just doesn’t have the energy to do this anymore (she’s very happy as it’s pink!!) She  currently is fighting off a virus and because of this has had to have her procedures at GOSH cancelled, as she isn’t well enough to go under general anaesthetic. We are hoping to spend her first Christmas at home this year!

Update 2nd November 2015

Isla has spent the whole of October in hospital, she got really sick with a candida infection and was transferred to GOSH PICU. The infection has hit her body really hard, she’s having a tough time building herself up. She’s been left very weak, pale and lethargic. She’s very frail and spends her time drifting in and out of sleep, and although we were discharged last week finally, she’s still having IVABs and lots of pain IVs to help her through this tough time.

Update 13th October 2015

Isla is currently very sick in GOSH with line sepsis. She was taken into PICU and is still struggling to make a recovery. We are yet to see any progress from her so really not in a good place at the moment.

Update 7th September 2015

Isla’s had a bad month again. She had to have surgery to correct her stoma prolapse issues, after we unfortunately had another blue light ambulance to GOSH, where it had prolapsed and was stuck out. She’s been incredibly brave and is still managing to smile despite all that keeps getting thrown her way.

Update 4th August 2015

Isla has had a really tough month. Her stoma prolapsed and she had to be rushed to Great Ormand Street for emergency surgery for reduction. This left her really uncomfortable and needing morphine to help with her pain. She is now home again but is still having prolapse problems, so we’re awaiting another surgery date to fix this.

Isla is still on her steroid treatment for inflammation of her colon and small bowel, but this is making her moods change rapidly and unfortunately making her quite unhappy a lot of the time.

Update 4th July 2015

Isla is still very poorly and she was admitted to GOSH for the emergency scopes. This revealed Isla has chronic inflammation that needs to be treated with steroids and more immune suppressive meds. She has a 10 week plan then scopes will be repeated.

Update 30th May 2015

Isla hasn’t been too well lately, she has an ulcerated stoma and it’s causing her lots of pain and discomfort. We were told she will be admitted to GOSH in July for a 4 week stay for some tests and to try and get on top of her pain. She also has to have some emergency scopes to check she isn’t inflamed inside.

Story written 2010

Adam was born at 31 weeks, 9 weeks premature. His bowel was gangrenous and volvus and he lost a third of it.

Adam has had 52 operations and procedures to date. Adam is TPN dependant and now is on the transplant waiting list at Kings College Hospital London.

In 2008, Adam was also diagnosed with Bilateral Cystic Kidney Disease.

Adam’s mum, Lesley, has written below how 2010 has been for Adam so far, in order to help everyone understand a little more about what life is like for him.

At the start of 2010 Adam was in hospital. He had a line infection that started at the end of November and had been on IV antibiotics since. He ended up staying until the middle of the month and he got very down this time as the infection took a lot out of him.

By February the line infection had finally gone. He had a kidney function test before going into GOSH for some of the other transplant assessment test. GOSH confirmed Adam does have polycystic kidneys disease. Then Adam went to Kings for the rest of the transplant assessment test and to meet the team. This was not easy for Adam as he was told he would lose colon and most of his stomach or it may also need transplanting.

In March, Adam started the vaccination course that Kings wanted, which was 2 x HEP A, 3 x HEP B, 1 X MENINGITIS, 1x BCG, 2 x ROTAVIRUS, 2 x SWINE FLU. Adam also had a heart function test and heart scan.

In April Adam had to have his wisdom teeth out and they were still under his gums. This was just in case they cause problems after transplant, so they had to cut his gums to get them out. Bless him, he was bruised, swollen and had stitches. He also had a course of urokinase and an ethanol lock for his central line problems that month.

By May, Adam’s central line was still causing problems, so another ethanol lock was needed. At a meeting between KINGS AND GOSH they decided Adam does needs a transplant and they can offer no other treatment. The surgeons all say it is to dangerous to go into Adam’s gut and have a look before transplant. Last time the surgeon had to call 2 other surgeons to help and to do his stoma it took 3 of them 9 hours. This has been really hard for Adam and he is now suffering from depression and anxiety so they started him on fluoxetine to help.

By June, Adam’s dehydration was becoming more of a problem in the hot weather so he is now 24/7 on his drip. He also sat his GCSEs at home at he hasn’t been to school for 3 years and he has home medical schooling.

In July Adam was put on the transplant waiting list – it has taken such a long time to get to this. Then Adam got a line infection that spread to his blood and then on top of that he got tonsillitis. We had another stay in hospital and lots of IV’s antibiotics but this time his gut stopped tolerating all other meds as well. All meds now have to be done IV.

Adam has been a little more stable in August, but his gut still won’t tolerate oral meds. Adam also started treatment for his colon which is short chain fatty acid enemas and are very unpleasant for Adam, he hates it but he has ulcerative colitis and diverticulitis as well. Adam’s nurse comes round every week to do this at home which helps as he really doesn’t like it. Adam’s platelets and neutrophils have also been low so they are keep a close check on him, lots of blood tests and they can’t use the central line. His dehydration is still a big problem but this won’t get better until he has the transplant.

Update 15th May 2011

Adam’s j-peg operation went well and we are now on top of the line infection which is good news. Adam has been transferred to Poole hospital and we are hoping he will be home this week, yippee!

Update 5th May 2011

Adam’s j-peg operation went well and we are now on top of the line infection which is good news. Adam has been transferred to Poole hospital and we are hoping he will be home this week, yippee!

Update 21st April 2011

Adam is home for Easter on tpn and peg feeds. Adam has to go back next Tuesday to start other treatment. Thank you all for your support.

Update 10th April 2011

Adam has lost a lot of weight from 54kg and is now 47kg. TPN stopped but he has had a bowel blockage already. He went back to saline for 24 hours and now we are starting pegs feeds up to 10mls per hour with saline. The problem is he is getting more and more tired and is in pain. Adam is getting very upset with the doctors as he feels they don’t listen to him. He has asked to speak to the surgeons about the pain he is in as he never had pain when he had a stoma.

Thank you for the box of wonderful goodies and for all the support you are giving Adam and our family. Also thank you for all the cards and well wishes as it really makes Adam smile. Adam will be in Kings for a while yet.

Update 25th March 2011

Adam’s bowel is still not working, he has lost half his colon and his small bowel is now made up from many bowel resections. The doctors are still hoping his bowel will start to work soon. He has lost about 5kg in weight so far. He is going to try peg feeds later today, starting at 5 mls per hour. The doctors want to put a j peg in but Adam has refused and said try his peg first. It looks like he will be here for a good few weeks more.

Thank you for all the post everyone has sent.

Update by the Post Pals team, March 2011

Adam received his call and went to theatre. He didn’t receive his transplant though and spent many days in ICU. He is now back on his normal ward and is in need of some smiles in the post.

Update 2nd February 2011

Adam has been on the transplant list now for 7 months and is finding it stressful. We had a false call – the ambulance came and off we set but when we got half way the transplant team called and said the surgeon had just refused the organ. We were told to turn round and go home and wait again. Adam was very grateful to the other family that wanted to help and was very sad for them as they have just lost their child. That evening we lit a candle for them and said a little prayer.

Adam has also sat some GCSE exams at home as he isn’t well enough to attend school. He thinks he did ok, so cross fingers for him.

Adam had all the pre transplant tests done a year ago now and has to have most of them done again now. One of Adam’s doctors decided he wanted Adam to transition to adult care and refused to do it properly, he just transferred him. Adam hadn’t even met his new doctor and this caused a lot of stress and we had some problems with his tpn. Adam is getting low in iron and the doctors think he will need to start infusions soon and he is low in vitamin D so he may have to have that infused as well.

We are looking forward to his birthday this month and thank you for all your support.

It has been lovely getting cards and well wishes from all over the world. Thank so much everyone for caring, it bring lots of smiles. Thank you for your kind and thoughtful gifts too. They really do make Adam smile when he is having a tough time. It’s really amazing that so many people are so caring and thoughtful. Thank you from all of us for supporting Adam.

Update 8th January 2011

December was a good month and the only problem Adam had was his central line keeps blocking so he has to have urokinase infusions to unblock and a couple of ethanol locks. The doctors have increased his calories again in his tpn to 3000 per day as weight gain is very slow. Tiredness is still a problem and Adam doesn’t like going out, but overall a good month.

Thank you to everyone who sent Adam Christmas cards and postcards, we were amazed at how many Adam received. Adam had cards and well wishes come from Japan, USA, Australia, New Zealand, Finland, China and many more. Thank you! He also had a lot of cards from home as well. Some of the cards were made by children and others were personalised. Thank you for all your kindness and support.

Thank you also for the gifts Adam received, they were amazing and lovely. Adam loved all the smellies, Stig and Top Gear presents. The orange t shirt he wore on Christmas day, the 007 cars he has on his window in his bedroom, the calendar on his door, and the dvds he is saving for when he goes into hospital. Also, the rotating picture cube and the maze ball, the picture which was hand painted and the magazines and car information were all great, thank all so much for caring.

Update 2nd December 2010

It’s been a very stressful month emotionally as we have met again with the transplant team. They are doing everything they can to get a transplant as soon as possible, but they have increased the size of the donor organ now twice, as they think the transplant needs to be done sooner. The problem with this is Adam will have an open graft and a lot of operations to close his tummy after and Adam is very upset by this. The risk of infection is higher so it’s understandable that Adam is feeling anxious.

Adam said thank you for all your support and sorry he is feeling down and he hasn’t replied yet to letters or emails. Adam doesn’t get out much (only twice this month) so your letters and cards are most welcome. Thank you to you all for supporting Adam.

Update 5th November 2010

Adam has spent some time this month back in hospital and had a worrying few days when we lost tpn feeding. Adam had an allergic reaction to a batch of his feed. Adam has no other means of feeding so it was very stressful but we had a new batch made up which took a few days and so far all is good. We also lost access to his central line as that blocked but with urokinase put in the line for 24 hours it cleared the line. However he had to have a canular in and with damaged veins it’s not nice and as he had no feed for a couple of days he lost 3kg in weight.

We met with the transplant team and had words of caution from the surgeons because he is not putting on weight with the tpn and it is not doing its job anymore – it is keeping him stable but nothing else. Adam was first listed for transplant as lifestyle, but that has changed and he is now listed for survival. They think the tpn will stop working in the future and Adam needs his transplant now for the best chance of survival. I’m so proud of Adam as he asked all the right questions and listened to the doctors. The surgeons have also said they think Adam is at greater risk of an open graft as he has a very small abdomen. This will mean more operations and a higher risk of infections after.

Thank you for all your cards and letters this month, Adam will try and reply. It was very kind of Kate and Post Pals to send Adam a gift package of Halloween goodies – thank you. Thank you also to Debbie for sending Halloween goodies – Adam made a Halloween pumpkin face with your wonderful gift. Thank you to everyone who has sent letters, cards and gifts, it is very kind of you.

Update 17th October 2010

Just a quick update on Adam. He is in hospital and is unable to have tpn which is a worry as he has no other means of feeding. Every time he is put on tpn he comes up in a painful rash and he is showing signs of being allergic to his feed. I will keep you informed.

Update 1st October 2010

Adam has had all the routine hospital appointments and blood tests etc. Adam’s biggest problem still remains the amount of time he spends each day on his drips. It means he doesn’t see his friends much (only twice this month). He is very isolated most of the time so your letters, cards and well wishes, are good for him.

Adam has a very good community nurse who comes out at least once or twice a week to do treatment at home and to keeps an eye on how dehydrated he is getting. We do all iv’s at home now which really helps, as Adam doesn’t like going to the hospital.

Thank you Post Pals for all you support. Thank you to everyone who is wishing Adam well. It’s a very stressful time with Adam being on the transplant list so thank you for thinking of him and caring. Thanks for the lovely cards and letters and to Hannah for the chuckling monkey, it’s very kind of you. Adam also received a lovely balloon with a happy smiley face and a lovely pillow case which he keeps on his bed.