Bedford dad runs half marathon for liver charity after son's rare disease diagnosis

Elan Weedon took on the 13.1-mile challenge on Sunday, November 1, to raise money for Liver UK, which has supported his family since his youngest son, Sonny, was diagnosed with a rare liver disease called biliary atresia.

Sonny was just three weeks old when he was diagnosed with the condition and underwent major surgery at King's College Hospital in London three weeks later.

His mother, Sophie, said the diagnosis had transformed family life.

"Since then, our lives have involved regular hospital admissions, ongoing monitoring, and specialist care under the incredible paediatric liver team at King's,” she said.

Sonny has two older brothers, Jaxson, six, and Milo, four, and Sophie said the hospital stays had been particularly difficult for the family.

"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," Sophie said.

The family has also received support from the Children's Liver Disease Foundation, which merged with the British Liver Trust in 2024 to form the charity now known as Liver UK.

Sophie said: "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."

Elan and Sophie initially set themselves a fundraising target of £1,000 for 2026.

Alongside the half marathon, they organised a supper club for friends and family in June, with donations taking their total to more than four times their original target.

Sophie said Sonny was currently doing well, but the family wanted to help ensure support remained available for others affected by childhood liver disease.

"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," she said.

"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, said: "We're delighted to hear that Sonny is currently doing well and that Elan and Sophie have smashed their fundraising target.

"Their efforts will enable us to continue to be there for families throughout the UK who need our help."

Donations can still be made through the family's JustGiving fundraising page.