How we help
CLDF provides a wide range of services to people who have been directly affected by childhood liver disease. Here some of those people explain how CLDF has helped them.
It was during a visit to the specialist liver unit at Birmingham Children’s Hospital when his parents, Tammy and Mark, first heard about Children’s Liver Disease Foundation (CLDF). “It was a really tough time for us,” says Tammy. “We knew nothing about Ollie’s condition and were so worried when we looked into the future about how it might affect him. But we noticed that all the information we were given about liver disease and Alagilles came from Children’s Liver Diseases Foundation and we found this really helpful.``
“When we attended the liver clinic back at the Royal Children’s Hospital, CLDF’s families officer would be there to chat to us. It was great to see a friendly face each time and she would always be happy to answer our questions.“
``When we heard that CLDF were coming over to Northern Ireland for a family weekend we weren’t too sure about it as Ollie was only a year old at the time and we thought he was too young to get involved with anything. However we decided to go along to the event, which was at local attraction, Todd’s Leap, and we are so glad we did. It was great, not only to meet more of the CLDF team but also to meet other families whose children have liver disease.``
``I even met a young lady called Katie who has the same condition as Ollie. She was amazing at answering any question I had on my mind. This meant a lot to me as Alagilles is such a rare condition. Ollie is doing pretty well at the moment although the itching (one of the symptoms of his condition) can really upset him. It’s one of the reasons I am so pleased to speak to people who understand what this is like.``
``I have kept in touch with Katie since the weekend and I also swapped numbers with some of the other mums. It is so helpful for me just to speak about what we’re going through with people who are experiencing a similar situation. I wouldn’t be able to do this if we hadn’t gone to the family weekend and now I have a little support network.”
Ollie is now four years old and at school, but his condition still presents multiple problems.
“As well as his liver issues he has pulmonary stenosis, increased intercranial hypertension with Papilledema which affects his brain and eyes, and pruritus,” says Tammy. ``There are so many doctors’ appointments to keep an eye on – liver and heart specialists, neurologists, the surgeons and also the dieticians. To each and every one of them I am forever grateful.”
“Ollie has also recently been put onto a supplement shake to help him gain weight as this is another aspect of the condition, he is an extremely fussy eater. It’s the pruritus, however which has been the biggest challenge it upsets him so much, mostly at night when he’s up and down constantly – it’s like having a newborn again. We have tried every medicine on the market and have recently been accepted onto a new trial medicine called Marilixabat which I’m really hoping makes a difference.”
“It can be hard on him some days with all the medication and of course he’s starting to ask why a lot more now. Bloods can be tough at times depending on how frequent we've to go and ophthalmology appointments are tricky because the eye drops give him blurred vision which really annoys him.”
“Now he’s in Primary One, I’ve realised how much his condition affects him, as he can struggle with concentration. On a positive note, because his medical team have communicated with the school, they are aware of his needs and accommodate him. Ollie’s liver doctor recently phoned the school principal to explain his situation from her point of view, for which I was very grateful. Other medical professionals have sent letters in and since receiving these, the school have been great. They have referred him onto a programme, RISE, where either an occupational therapist, physiotherapist or speech and language therapist comes into school once a week to do a little bit extra work to benefit him.``
“The other mums I met through CLDF are still very important to me and we keep in contact in person and on Facebook. I would recommend any parent in this position to do the same. We’re all in the same situation so we all understand. I’m so proud of Ollie. He is such a little trooper with everything he has to cope with and, for us, it’s easier to cope if we know we’re not alone.”
Shelley contacted CLDF’s Support team who arranged for Flo to join in a Hive Hangout, a virtual get-together with other people her age.
“I did meet other children with liver disease when I was in Kings having my transplant but that was four years ago”, says Flo. “So, I was really happy at the thought of chatting to people who were just like me. The Hangout was fun. Even though I hadn’t met the other people before it was nice to chat to them because they’ve all been through the same as me. I’ve done the Halloween Hangout since then – in fancy dress! And I’m definitely going to do more.”
Shelly is delighted with Flo’s reaction to the Hangouts: “After the first one she was buzzing with excitement and said, ‘I can't believe I am not alone.’ I think I had underestimated the importance for Flo to know she is not the only child that has experienced life with a liver disease, before, during and after transplant.
“I would certainly recommend CLDF Hive to parents of other youngsters with a liver condition. It’s an easy and safe way they can connect with others in their situation without investing significant time or expense. And the feeling of understanding and belonging brings real benefits.”
Although relieved that the second operation was a success, Maham and her parents were conscious that they knew nothing about liver disease in young people and wanted to know all they could about living with a liver transplant.
So they were pleased when a nurse on the ward told them about CLDF and shortly afterwards a member of the charity’s support team came to visit Maham.“We realised that CLDF was a good source of information so when we heard they were holding a conference and family weekend, it seemed ideal for us all to go along,” explains Maham’s mum Habiba.
“We wanted to gain an insight into what is happening around us relating to liver conditions and the prospect of a day at Drayton Manor really appealed to our girls.“We arranged for our youngest daughter to go into the creche and I must adnit I Initially thought that she wouldn’t cope well but she had a really interesting day which meant that we were free to make the most of the conference.
Our other three daughters had the time of their life, especially Maham, since she is a very adventurous girl and loves going to theme parks. As soon as her doctor gave her go ahead to go on rides, she was absolutely thrilled!“As parents we found the whole day so valuable, from listening to the doctors to hearing from other people who have had a liver transplant.
We attended the session on Transition because in about a year Maham will be moving from paediatric to adult liver care and this helped us to prepare ourselves mentally and emotionally.“It was great to meet other parents and listen to their worries and questions that we could relate to. We also met a girl who received a transplant at early age and is now a mentor at King’s College Hospital. She was kind enough to share her details with us so that Maham can get in touch with her at her own convenience.
“We met many parents and each story was inspirational and had an impact in itself. We realised that it’s not just us and our daughter who have been through a great ordeal, there are many other families in a similar or even worse situation.
“The highlight for us was definitely hearing from young people who had been so poorly or received a transplant when they were very young telling us about their lives now.
As a parent you worry about your children’s future all the time and this had such a powerful impact. We have shared these stories with Maham and she too found them very inspiring.
“It was a great weekend and we would certainly be most happy to come back to conference next time.”
It meant that he was very poorly from birth and had problems with his blood pressure, feeding and physical development“His first year of life was touch and go” explains Harrison’s dad, Mick.
“He had a kidney removed at eight months old and his energy levels were extremely low. When he was five years old he underwent a kidney and liver transplant and consquently mised a lot of his first year at school..
Harrison life was more hospital stays and appointments, procedures and operations than a “normal” baby, toddler and starting school life.“Happily, since his transplant his quality of life has improved greatly and now he is able enjoy is life and be included in activities which wouldn’t have been possible before.
However he does have to take daily medication and have regular check ups and because his condition is so rare, it can be difficult for other children to understand the impact.“It was during a visit to the liver clinic last year that we met the families officer from Children’s Liver Disease Foundation (CLDF). It was great to realise that there was an organisation there for families like us with people we could talk to.
“She told us about Wild Camp, a weekend away in the ‘great outdoors’ for young people and a parent. Harrison and I were very keen – it sounded like great fun and nothing we had done before!”So Harrison and his dad headed off to deepest Derbyshire for a weekend of games, campfire cooking and even building and sleeping in their own shelter!“We loved it!” says Mick.
“Harrison loves making new friends and learning new skills and he particularly enjoyed baking his own bread and eating pigeon stir fry. I just loved the whole thing.
It was so nice to chat to parents who completely understand our situation and for Harrison to realise that he is not alone and there are other children coping with rare conditions just like him.
“He now has the time and energy to catch up with his peers physically and educationally. Wild Camp was such a positive experience for him and he can’t wait to come back.”
“At nine weeks old Halima underwent surgery known as the Kasai procedure to try to establish bile flow” says Jemima. “Unfortunately we were informed straight away that it was unlikely to be successful as her liver was in a bad condition.
After a few follow up appointments and various tests Halima was listed for a liver transplant. She has been in and out of hospital since, sometimes for weeks at a time.
Because she was not taking her feeds and therefore losing weight she was fitted an NG feeding tube in November. Since then she has slowly put on weight and is doing much better. We are hoping that Halima’s father will be able to be her live liver donor and are still awaiting for his final appointment with the consultant.I first heard about CLDF from the staff at Kings College Hospital after Halima’s Kasai surgery.
However, my head was all over the place at that time and I thought no more of it. Then when Halima was listed for transplant, the transplant coordinator at Kings advised me to contact CLDF, she explained a little about who they were and what they did.When I called CLDF myself I spoke to a member of their team who was just amazing.
I felt so comfortable talking to her as I felt she cared and was interested in what I had to say, and answered all the questions I asked. I even told her about my own medical condition. So as well as sending me information about CLDF, and biliary atresia, she also included information about Sclerosing Cholangitis for me.
After going on the website, and reading up about CLDF I was definitely intrigued to go to one of their events. Prior to Halima being diagnosed we’d never heard of biliary atresia or anything to do with liver transplant. And although family and friends have been great, they don’t really understand what we are going through.
We wanted to meet other families in similar situations. Fortunately there was an event coming up which was near us in London so we all went along.We really enjoyed the day because everyone was very friendly and willing to share their stories which were all amazing to hear.
It was just an eye opener for us to see and hear so many experiences. Adebowale was lucky enough to meet a mother who had donated part of her liver to her son so was able to answer some of his questions.
The whole atmosphere made it easy to approach other families which we’d never been able to do before. Although like Halima, some of the children had not had happy beginnings, it was lovely to see so many children thriving and doing so well.
We are definitely going to keep in touch with the CLDF team and with some of the families we met that day. They have given us hope for Halima’s future. “
Daniel takes up the story.
Ethan developed a severe rash on his legs and began to lose weight. He was taken to hospital where he was initially diagnosed with Henock- Schonlein purpura (HSP).
After five weeks in hospital and a liver biopsy he was diagnosed with reactive hepatitis. Subsequent blood tests highlighted ongoing issues with his liver and another biopsy was taken in December 2015 which confirmed that Ethan had developed autoimmune liver disease.
Shortly after this we were also told that Ethan had a secondary but linked condition called generalised acquired lipodystrophy.
Reaching a conclusive diagnosis took some time and was stressful. So even though we had hoped for a different outcome, it was a relief to finally know what Ethan had. It was at the liver unit at Birmingham Children’s Hospital, just after Ethan was diagnosed, that we met Jacquie from CLDF.
She explained what the charity did and how they could help us. It was so reassuring to discover that there was a dedicated charity that could give us all the information and support we needed and with staff at the hospital we could speak to.With no family history of autoimmune disease, CLDF has been a major source of information for us.
We have received everything from an explanation of Ethan’s condition and the tests which have been carried out to advice on nutrition, travelling with an immunosuppressed child and even an education pack for when he starts school in September.This summer we went to our first CLDF picnic at Batsford Arboretum.
It was a fantastic location and we particularly enjoyed the bug hunting and rolling down the hill full of sandwiches and cake!We rarely get to speak to other parents who understand what autoimmune liver disease is and the impact it has on a child, so it was great to meet other families at the picnic who could relate to everything Ethan has been through.
And while we wouldn’t wish this condition on anyone, it was comforting to know we are not alone.We will definitely attend future events and, when Ethan gets older, we hope he can join in the many trips away which CLDF arrange for young people.
We just need to warn them he eats a lot and is very loud……..!
It was here that tests revealed that not only did Michael have the rare liver disease, primary sclerosing cholangitis, but that his liver was so badly damaged, he needed a transplant.“Whilst we were relieved to find out what was making Michael so poorly, it was a shock to know that a transplant was his only option,” says his mum, Marina.
“We are so lucky that Michael only had to wait three months for a transplant and thankfully his new liver is working well. But everything happened so quickly, it was a lot to take in, particularly for someone of Michael’s age who has always been active and had so much on at school with exams.
“So we were pleased to meet the families officer from Children’s Liver Disease Foundation in hospital, who provided us with lots of information on Michael’s condition and what it meant for him.”When Michael heard about the CLDF Weekender, an event for young people from around the UK who have a liver condition, he decided to go along.
“I thought it would be good to meet other people my age who knew what it was like to live with such a rare condition,” he explained.
So Michael headed off to Derby University and followoing a weekend of team building games, partying and even a drumming workshop, Michael no longer felt alone.“It was great fun,” he said.
“I enjoyed all the activities but the best bit was talking to people who have been through what I have. It’s made a big difference to my self- confidence and I now feel much better able to cope with all the day to day stuff.
“Now I know that there are other people out there just like me and that CLDF are there whenever I need them!”
“It means that Kirsty will often feel sick, her skin turns yellow, she bruises very easily and her energy levels are low,” explains her mum Avril. “And feeling tired all the time definitely affects her schooling, particularly now she is at senior school.
“We first heard about Children’s Liver Disease Foundation last year when Louise, their young people’s officer, came along to the liver clinic at Addenbrooke’s Hospital when we were there for one of Kirsty’s appointments.
“Louise explained how CLDF could help us with information and support and since then we have had regular updates by email, text and post and we’ve also joined their Facebook group. When Louise told us about the family event that CLDF was planning in Birmingham we decided to come along. My husband Tony and I wanted to meet other families who have children with liver disease to see how they cope with it all. Plus, we wanted Kirsty to meet other people in her situation and see that she is not the only one.
“We were so glad we did. Just as we had hoped, we got to meet other nice and funny parents and families and get advice from them. We met the CLDF staff and put names to faces. We were made to feel like we mattered and that was a real help to us.”
Kirsty meanwhile got to meet other young people who have a liver condition.
“Coming to terms with having Alpha 1 has not been easy and there have been times I have been bullied at school for going yellow,” she says.” It was nice to realise that I’m not alone and that other kids have experienced the medical problems I have. I think it’s made me more accepting of having Alpha 1 and able to talk about it more.”
The family are certainly planning to come to future events, particularly as Kirsty is currently undergoing investigations into a second liver disease.
“It’s good to know that there is a support network out there for Kirsty and for us who will help us cope with this,” says Avril. “Knowing that you are not alone makes a real difference.”
“I had never been to a CLDF event and didn’t know what to expect but it was great fun,” says Melissa. “The best bit was building models out of chocolate and meeting other children who have liver disease like me.“Then a few months later, when my mum and dad went to the conference, I went to Drayton Manor.
That was even better. I met more new friends and was able to spend the whole day with them. It was a really exciting day – there were so many rides to choose from.I am definitely looking forward to my next CLDF event.
I have lots of friends at school but it’s great to meet people who really understand what it’s like to have a liver disease”
“When the hospital did blood tests, they could see that there was a problem with his liver but he also had sepsis” explains Thomas’ dad David. “The next day we were transferred by air ambulance to Birmingham Children’s Hospital where they successfully treated the sepsis but confirmed that he had biliary atresia, a rare and life threatening liver disease “
It was while David was in hospital with Thomas that he first encountered Children’s Liver Disease Foundation. “The staff would come into the hospital, talk to the parents and patients (if they were old enough). They would bring in cakes and get anything that was needed. It sounds like a very simple thing, but when you have been living on the ward for an extended period any glimpse of reality helps.”
Even after Thomas was discharged from Birmingham Children’s Hospital, the next few months were tough on the whole family as Thomas’ condition did not improve and there were several trips both to their local hospital and to Belfast Children’s Hospital.
On September 24 Thomas was admitted to Birmingham Children’s Hospital once more and his family were told that a liver transplant was his only option. Fortunately he did not have to wait long for a donor liver to become available and received his transplant on October 7. After two weeks he was able to come home and happily he has continued to thrive since. Throughout their experience Thomas’ family has found CLDF’s support extremely valuable.
“As well as visiting us in hospital, CLDF organise events here in Northern Ireland which the whole family can attend” says David. “It means Thomas’ elder sisters and brother can meet others who have been through the same experience of having their parents away for extended periods while their sibling has major surgery. I always feel it is the other children that suffer privately and these events really help as they know they are not the only ones who have been through this separation.
“Medical staff do a wonderful job and take care of the patient’s every need but having someone to talk to, having a cup of coffee and a bun handed to you can turn a very stressful and unbearable situation into something that can be coped with and this is where CLDF come in. The simple act of friendship from someone who has time and knowledge to explain something is more important than anyone can imagine.”
“She was diagnosed with cryptogenic cirrhosis, which is a doctors way of saying ‘we don’t know the true cause despite tests,” says her father, Asif.
“We did hear about Children’s Liver Disease Foundation when we were in hospital in Leeds but to be honest we had so much to cope with that we didn’t really engage with the charity at the time.”
Unfortunately Faziah’s condition did not improve and when she was just a year old she was given a life-saving liver transplant.
“Happily Faziah has made good progress since her transplant and now we feel we want to give something back,” continues Asif. “We decided to come to the CLDF family day in York as we were interested to meet other parents in a similar situation and see how we can help. We also wanted our children to meet other children with similar problems and to create solidarity around the issue”
The York family day which had an Alice in Wonderland theme, provided plenty of opportunity for Asif and his wife Nazneento meet other parents while Faziah and her brother and sister thoroughly enjoyed the pantomime and the arts and craft activity.
“As parents it was great to speak to others about different points on that journey towards transplant,” said Asif. “It brought back many memories and we wanted to offer moral support to others. It was great that the day involved the whole family because it’s important that our other children understand the nature of Faizahs illness and how it affects her and others.
“For Faizah, meeting and making friends with other children in her siituation can improve confidence so we will definitely be interested in future events!”
Anna was first diagnosed with portal hypertension in 2017 when she was aged seven. She had lots of nosebleeds when she was younger and had an operation in 2015 on her adenoids, but when the bleeds returned in summer of 2016 and she presented with easy bruising too, she was referred for a blood test and subsequently a haematologist. She had a low blood count, and so we had a year of tests, scans, bone marrows, blood tests and hospital admissions to try and find out why. It was when she was in hospital for an infection in the late summer of 2017 that they realised she had an enlarged spleen. A few scans later, and they realised she had portal hypertension. She since had lots more tests – they only exhausted those tests in late 2019 – but they still don't know why she has PH.
It was in early 2018 when Anna was in hospital for an endoscope and banding - and I was asking questions - that one of her gastroenterologists mentioned Children’s Liver Disease Foundation and its website as a source of information. It was the only place we could find accessible, non-medicalised information about her condition (I had googled it before, which is never a great idea). It was ideal to share with wider family, who also had lots of questions. I registered with CLDF for mailings etc, and that's when we started to get invitations to events. We all went on the Scotland Family weekend in July 2018 and again the following March – and we really enjoyed both.
Since then, CLDF's services have been great. Their information booklets have been really useful - I was able to use relevant elements of the education pack with Anna's school to explain her condition to teachers and tell them what to look out for, for example if she feels unwell, or has a gastro bleed and what to do. This was good for peace of mind on both sides.
Because of CLDF, we’ve met some really lovely families in similar situations to us and that’s a huge benefit. Just being able to speak to people who know what you're talking about when you talk about scopes and bloods, and being able to share your worries is really valuable. You don't need to explain everything! The staff really understand your worries too, and always offer a listening ear. For example, I was worried about starting a new job because Anna has lots of hospital appointments. Kate, CLDF’s families officer, gave me some info to pass onto my new employers and even offered to speak to them (which wasn't needed in the end because they’ve been really supportive). It's good to know that there's a support network there for us, especially as we don't know how Anna's condition will progress in the future and what further information and emotional support we might need.
Even though the pandemic has brought about changes, the support remains the same. We attended CLDF’s virtual conference in November - the parent info sessions were really informative, and Anna enjoyed the children's activities too. I've also dropped into some of the family drop-in sessions on Zoom and it's nice to see people and hear how they’re getting on, and know that people understand your worries about Covid.
I think the most important thing about the CLDF is the support network it builds - when your child has a relatively rare condition, not many people understand it or your worries. But CLDF understand and support you - and it brings people together and helps us support each other. The information it provides is also really crucial too – practical stuff as well as medical info - because good information is hard to find but when you have knowledge you feel empowered.