Stoke-on-Trent dad to run 5 marathons in aid of rare disorder

The father of a three-year-old boy with a rare genetic condition is to run five marathons in five days to raise money for a charity that carries out research into the disorder.

Dan Booth, from Stoke-on-Trent, said his son Charlie was diagnosed with STXBP1 disorder, a neurological condition, after suffering seizures as a baby.

Since then, he said the family had been “navigating this new world – one filled with challenges, but also incredible love, resilience, and joy”.

Mr Booth runs his first marathon on 28 May in and around his local area and will be joined by other families impacted by the condition.

“I’m looking forward to it as I’ll have friends and family joining me, and we’ve been reaching out to other families affected by this and they’ll be joining, so they will all help me through,” he said.

Charlie was born in October 2021, and began experiencing seizures shortly after. He spent a month in hospital before he was diagnosed.

The little-known disorder affects children differently but causes Charlie’s seizures, and has also impacted his development, mobility and communication, his father said.

Mr Booth said he wanted to raise money for the STXBP1 Foundation, which endeavours to find a cure with gene therapy.

Earlier this week, Mr Booth said the US Food and Drug Administration officially cleared the first IV-administered gene therapy to begin human clinical trials in the US.

He described it as “a genuinely historic moment for the rare disease community and for families like mine”.

“This breakthrough is the exact kind of research that fundraising like mine helps push forward,” he said.

“Every pound we raise will now go towards proving whether this treatment really works – and potentially bringing us closer to an actual cure.”

The trial aims to replace faulty genes and reduce or stop seizures and improve mobility, he said.

“There are around 5,000 kids in the world with this so if it works, their lives could really be improved and that’s so important.”

Mr Booth said he was hoping to raise £10,000 for the charity through his challenge.