A dad of three from Bedford, whose 16-month-old son has a rare liver disease, is training for the Hertfordshire Half Marathon on November 1 in a bid to raise as much as he can for Liver UK. Elan Weedon and his wife, Sophie, have been receiving information and support from the charity since their youngest child, Sonny, was diagnosed with the life-threatening disease, biliary atresia.
“Sonny’s diagnosis at just three weeks old was life-changing for us all,” says Sophie. “He was only six weeks old when he underwent major surgery at King’s College Hospital in London to try and establish bile flow from his liver. Since then, our lives have involved regular hospital admissions, ongoing monitoring, and specialist care under the incredible paediatric liver team at King’s.
“Sonny has two older brothers, six-year-old Jaxson and Milo, who is four, and they all love each other very much. The hospital stays have been really challenging with us all being separated and we are super lucky to have the most amazing family and friend support group around us.
“Like so many families affected by childhood liver disease, we’ve had to learn very quickly how complex, uncertain, and emotionally challenging this journey can be. Alongside the medical care, the information, guidance, and support provided by Children’s Liver Disease Foundation, (now Liver UK) have been invaluable to us. I’ve been able to speak to Kate, the families officer, and to read about the experiences of other families in our situation, which I find helpful.
“We decided that in 2026 we wanted to give something back, so set ourselves the target of raising £1,000 for the British Liver Trust this year. Elan decided to take on the Hertfordshire Half, and we hosted a supper club for friends and family in June. We’ve been overwhelmed with support from family and friends and delighted to have trebled our fundraising target, but we’re determined to keep going.
“Sonny is currently doing well, but childhood liver disease is unpredictable, and we want to know that Liver UK will be here for him and for us as he gets older. We also want to ensure that other families in our situation will receive this kind of support.”
Michelle Wilkins, Head of Children’s and Families Services at Liver UK commented: “A diagnosis of liver disease in a child is a shattering one for any family and we provide information and support so that parents and young people realise they are not alone. We’re delighted to hear that Sonny is currently doing well and very grateful for the fundraising which Elan and Sophie are undertaking this year. Their efforts will enable us to continue to be there for families throughout the UK who need our help.”
You can support Elan and Sophie’s fundraising at Sophie and EJ Weedon is fundraising for British Liver Trust.
