Eight year- old Charlotte used to feel like she was the only person who had ever had a liver transplant. But that all changed when she and her dad, Andrew, joined Children’s Liver Disease Foundation at Wild Camp, a weekend of activity in the Oxfordshire great outdoors.

Cherish every minute

Childhood liver disease is rare and therefore often difficult to diagnose. Here Samantha shares her experience.

I am the mother of Logan, a lovely 14 year old lad, who at the age of three was displaying signs that something was not quite right with his general health.
Being a midwife and having two other children ( a 15 year old son and a two year old daughter)  I had medical knowledge and parental experience in knowing something was amiss.
Logan , who is now 14 years old, was having loads of colds, flu’s and was catching every childhood illness there was. His vaccines were delayed at times due to him having another period of ill health.
I took him to the GP at the age of 3 and asked if he would please refer him as I knew something wasn’t right. The GP said he looked fit and well “he doesn’t look anaemic or anything”.
He did refer him, however, as he knew my occupation and also knew that I wouldn’t have been there if I wasn’t worried.
Then my son was seen by the paediatric team I worked with. They did a physical examination and took bloods. I could tell by my colleagues faces that not all was well.
I was told my son had a very enlarged spleen and his bloods had come back quite deranged. They had ordered further bloods including a blood film. They were suspecting all sorts of conditions at this time.
We had an ultrasound arranged which revealed that his liver was slightly enlarged and his spleen was bigger than an adult males’ despite the fact he was only three years old!
The medical team then requested a bone marrow biopsy which came back ok. Still scratching their heads, they continued to monitor him every six months. There was no change in his condition other than an abnormal INR and full blood count and his liver enzymes were going up and down.

When sixteen year old Michael became ill in October 2017 his local hospital, the Royal Victoria Sick Children’s hospital in Belfast, referred him to the specialist children’s liver unit at Bimingham Children’s Hospital. 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 following 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!” Thank you to Michael for sharing his story with CLDF, if you would like more information on Young People support and events click HERE. If you would like information on Family support and events click HERE.

When six year old Faizah was just a few weeks old, doctors told her parents that there were problems with her liver.

“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!”

When Ethan was born in March 2014 he was a happy and healthy baby. It was shortly after his first birthday, however, that his parents, Daniel and Lucy, noticed that something wasn’t quite right. 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……..!

Ollie was just a couple of days old when doctors at hospital in Belfast told his parents that they thought he might have Alagille syndrome, a rare genetic condition which can also affect the heart, kidneys, eyes and bones as well as the liver

Months of tests and hospital stays followed until Ollie’s diagnosis was confirmed when he was four months old. 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 Diseaes 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 expericing 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.”

Jemima and Adebowale’s youngest child, Halima, was born on June 8^th 2017. Eight weeks later she was diagnosed with the rare liver disease, biliary atresia which means her bile ducts were damaged and her liver was not functioning properly.

“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.”

Eight year old Harrison was born with the rare genetic condition, autosomal recessive polycystic kidney disease, a condition which also affected his liver.. 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.”

The Jawwad family’s life was turned upside down in August 2017 when their daughter Maham, then 15, was diagnosed with liver cancer.

In addition to four sessions of chemotherapy, Maham was told she needed a liver transplant but the first operation in February 2018 was unsuccessful and she had to undergo a second just three days later. 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 pepole who have had a liver transplant.  We attended the session on Transition becaase 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.”

A student who was diagnosed with the incurable condition, auto-immune liver disease, two years ago, was so struck by the difference good nursing can make, she is now embarking on her second year of a nursing degree at the University of Birmingham and plans to specialise in liver care.Nineteen year old Thaminah Chowdhury, who is originally from Bristol, had always been fit and healthy but began to feel unwell in August 2016.“I thought it was just a bug that would go away and thought that doing to the doctor would be a waste of time,” she explains. “The next thing I knew I had blacked out and been admitted to A and E where I was told that my liver functions were ‘deranged’ and I would need a liver biopsy.“When the results came through and I was told on September 22 that I had autoimmune liver disease, I felt like my whole world had been crushed. I could not explain the pain of being told you have a condition which means medication for the rest of your life. Returning to sixth form was really difficult. I felt so alone and just wanted to research more and more into auto-immune liver disease. That’s when I came across Children’s Liver Disease Foundation (CLDF). I dropped them a message and that was when, with their support, I slowly began to come to terms with my diagnosis. The staff there listened to me, understood and even sent an information pack to my school to show them how they could support me.“Sixth form was never easy, I would always dread my hospital appointments, I spent days at home resting because of the chronic fatigue and struggled to keep up in class.“Prior to this, although I was passionate about helping people, nursing had not been a career option for me. It was only when I was admitted to hospital and felt terrified and alone that I saw the difference good nursing really makes. There was a healthcare assistant who listened to me and gave me hope that things would get better. And there was also a nurse who did my blood tests (of which I was terrified) whom I could talk to about anything. They both inspired me to take up nursing.“In the end, despite my struggles, I received two A stars and an A in my A Levels. I have learnt that this condition only makes me work harder.

I was accepted to do nursing at the University of Birmingham which means gaining experience at the wonderful Queen Elizabeth Hospital. It so happened that my first placement was on the liver ward and meeting people with similar conditions to me has allowed me to finally accept having auto-immune liver disease. I’ve seen amazing things and even got to be part of a clinical trial. I am proud of who I have become today because without this condition I would not have realised my own potential as a fighter or met the beautiful patients and staff at QE or the wonderful people at CLDF.

“I still have my bad days with the struggles of the tiredness or the side effects of the medication. But I believe my experience will make me a better nurse. I know about the constant waiting for results, being scared about a procedure or a stay in hospital. I want to make patients feel safe and not alone.“I’m starting my second year’s training now and when I qualify I want to specialize in liver nursing. I have learnt that with a few adjustments you can live your life with my condition. If you keep fighting and you have the right support, anything is possible with a little hope and faith.”Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “Being diagnosed with a lifelong liver condition when you are so young is a distressing and potentially isolating experience which is why we provide a range of support for young people in this situation around the UK.

We are incredibly proud of Thaminah. Not only has she learnt to live with this condition, but she is determined to help other young people live with it too. I’m sure she will make a wonderful nurse and we wish her all the best in her training.”For more information on CLDF visit childliverdisease.org.