Pupils at St Johns CofE Primary School in Digswell swapped their school uniform for yellow last week, raising £529 to support young people and families affected by childhood liver disease. The school was taking part in Big Yellow Friday, the national fundraising and awareness day of Children’s Liver Disease Foundation (now merged with the British Liver Trust) and children were inspired to support the charity as two of their classmates have been directly affected.
Eight-year-old Isaac, who was born with the rare condition, Alagille syndrome, received two liver transplants in the space of a few days in 2020. Since then, he has thrived and is able to live life to the full. His mum Liz says: “Isaac is very aware that two boys saved his life and how lucky we are he got the chance to thrive. Quite simply, without organ donation, Isaac wouldn’t be here today.
“Children’s Liver Disease Foundation played a huge part in helping us come to terms with living with a child with liver disease. We had never even heard of Alagille syndrome until Isaac was diagnosed. We’re supporting Big Yellow Friday both because we want to show people Isaac doesn’t have to live a life defined by liver disease and because we want to keep this incredible charity going to support other families like ours.”
Isaac’s friend Theo (10) knows all about childhood liver disease because his big brother, Nico (now19), was diagnosed at five years old with congenital hepatic fibrosis and was told three and a half years ago that he needed a liver transplant.
“The impact this has had on our family has been huge,” explains Theo and Nico’s mum, Aimee. “Waiting over three years felt like life was on hold, with constant worry as Nico’s chronic condition worsened, began affecting other organs, and reduced his overall capability. The ongoing appointments, hospital admissions, and time spent separated as a family really took their toll.
“The long-awaited call finally came through last month and we’re so grateful that Nico has now received his gift of life. It’s early days but the signs are positive that his liver transplant has been a success.
“Throughout all of this, Theo’s school has shown real compassion and flexibility which has helped him to cope with everything which has been going on at home. So, it seems really fitting that this is where our Big Yellow Friday fundraiser should take place. The support we have received from Children’s Liver Disease Foundation has been invaluable, especially during the long waiting period when uncertainty felt relentless. Knowing there is a charity dedicated specifically to children and young people with liver disease and to their families brings reassurance that you are not navigating this alone. So, supporting Big Yellow Friday felt like a way of giving back and standing alongside other families walking a similar path.”
Michelle Wilkins, Head of Children and Families Services at British Liver Trust, added: “Having supported both families over the years, it’s wonderful to see them joining in with Big Yellow Friday. And we’re delighted to see that the event is taking place at school. A supportive school environment makes a huge difference to a child with a liver condition and Big Yellow Friday is a great opportunity to raise awareness and understanding of childhood liver disease. The funds raised will help us make a real difference to young people and their families around the UK and we’re truly grateful”
You can support Big Yellow Friday by going to Big Yellow Friday | Children’s Liver Disease Foundation
