Mum and daughter taking on marathon for rare genetic condition

Meet Jo, a mum preparing for the Altra Kielder Marathon next weekend to raise money for CASK Research, and her daughter Alice, who will be pushed by Jo in her wheelchair round the course.

“I’m running the Kielder Marathon while pushing my 24-year-old daughter Alice in her Delichon Delta running wheelchair – all to raise money for CASK Research, a charity dedicated to finding treatment for her rare and life-limiting condition.”

Alice has a CASK gene mutation, a condition so rare that there is currently no cure. It causes her to have epilepsy, severe visual impairment, and she can’t eat or drink, so is fed through a tube into her stomach for over 20 hours a day. She can’t walk or talk, and the condition is progressive – we don’t know what skill she might lose next.

“Alice is the reason I started running. I needed to stay fit to lift her and give her the life she deserves, but I also wanted something we could do together that fit around full-time work. I never imagined how much she would love it – or how incredibly welcoming the running world would be.”

In a world where inclusion for adults with complex needs is pretty rubbish, running has given Alice a place where she belongs. She’s part of a community that sees her, welcomes her and cheers her on every step of the way.

Usually, Jo and Alice raise funds for charities that have supported Alice, but this year is different. Cure CASK are now working to find answers specifically for others like her. There’s no cure for Alice’s condition, but halting or slowing the loss of skills could make all the difference.

“I’ll never truly understand what it’s like to slowly lose the ability to walk, to sit upright, or even enjoy chocolate – which she loved – but Alice knows, and she lives it every day. She is one of the oldest girls with this condition, and her strength keeps me going.”

“I’ll be pushing Alice every mile of the way – for her, and for a future where others like her don’t have to face this alone.”