Big Yellow Friday –

4 March 2022

Each week in the UK, 20 children are diagnosed with liver disease. There is currently no cure for childhood liver disease – a diagnosis means a lifetime of medical care.

By joining in with #BigYellowFriday, you’ll be helping us make a difference to thousands of families, as you can see from the stories below.

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Who your Big Yellow Friday funding helps

Habiba’s story

“As a family we know all about the impact which child liver disease can have.Habiba, who is the youngest of my five children, was diagnosed with biliary atresia at birth. By the time she was five her condition had deteriorated and we were told she needed a transplant.

Unfortunately, it was unsuccessful and a year later she underwent a second transplant. Sadly that failed too as did her third. It was only after her fourth liver transplant that she began to thrive.

We had started to wonder whether her body could survive it all but she came through it and is now full of energy and doing well at school.We have had so much support from CLDF that we always join in Big Yellow Friday.

It’s a great way of raising awareness of children’s liver disease. So many people know nothing about it at all.Habiba’s school are really supportive. They always have a Wear Something Yellow Day and a cake and samosa sale – we have raised over £2,000 to date.We are already planning next year’s event!”

– Farzana, Habiba’s mum

Dr Jake Mann's story

Funding from Big Yellow Friday also helps fund research into childhood liver disease. Dr Jake Mann - one of the beneficiaries of our research funding programme - is leading an investigation into the development of non-alcoholic fatty liver disease (NAFLD) in children.

Funding from Big Yellow Friday enables us to provide financial grants to a variety of research projects exploring childhood liver disease.

Dr Jake Mann is just one of the scientists whose work benefits from this funding. His study focuses on the development of non-alcoholic fatty liver disease (NAFLD) in children who have received treatment for craniopharyngioma brain tumours. Young craniopharyngioma tumour patients are more at risk for developing obesity and NAFLD, due to the tumour's position within the brain area that controls appetite and hormone levels. However it is still not understood why NAFLD develops quicker in these patients than other children with obesity.

This research project has also lead to the development of a blood test that could become clinical practice within five years, reducing the need for a liver biopsy in the management of paediatric NAFLD. Dr Jake Mann commented:

“It is early days, but the results of the research are promising and could help shift the way we understand and manage paediatric NAFLD: saving resources, time, and stress for children and their parents.”

Thomas’s story

Thomas from Portadown in Northern Ireland who was born in March 2017 was just eight days old when his GP referred him to hospital with a slight heart murmur.

“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.”Donations from Big Yellow Friday provide Children’s Liver Disease Foundation the funds to put towards a support team to attend hospitals and clinics and meet families such as the Bell Family.

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