In 2027, I’ll be running the London Marathon for the Lily Foundation, a charity that has become a huge part of our lives.

Our daughter, Ellie, was diagnosed with a rare form of mitochondrial disease when she was two years old, just a couple of days before Christmas 2022. After months of tests and investigations into why she wasn’t growing or meeting milestones, we finally had an answer, just not one we wanted. Ellie’s particular genetic variant is so rare that nobody can tell us exactly what the future looks like, so we’ve learned to take things one day at a time and celebrate every milestone she reaches.

Ellie has regular appointments at Alder Hey Children’s Hospital and travels to Newcastle to see the specialist mitochondrial team. She lives with kidney problems, an unsafe swallow and fatigue, alongside her spina bifida and hydrocephalus. But those things don’t define her. She’s a happy, cheeky little girl who loves making people laugh, getting up to mischief, and keeping us on our toes.

The Lily Foundation has been there for us from the beginning. The support, advice and friendships we’ve found through the charity have made a real difference, and the Lily Family Weekend has become one of the highlights of our year. Ellie gets to spend time with other children living with mitochondrial disease, while we get the chance to meet other families who understand what life is really like and learn from some of the UK’s leading specialists.

As for the marathon… I’ve never been a runner. Before signing up, I honestly couldn’t remember the last time I’d gone for a run, and I’d never even managed to run one mile before. Training has been a real challenge, and there have definitely been runs where I’ve questioned what I was thinking by signing up for this.. but compared to what Ellie takes in her stride every day, putting in the miles feels like a pretty small thing to do.

I’m running this marathon for Ellie, and for every family affected by mitochondrial disease. If you’d like to support me, every donation will help the Lily Foundation continue supporting families like ours and funding research into this rare disease. Hopefully one day finding a cure!

Thank you so much for taking the time to read this, and for any support you’re able to give.