Last year, I set myself a challenge to run 100 half marathons, a marathon and an ultra marathon for Albie. By October, I had reached that target — but I couldn’t stop there. By the end of the year, I had completed 125 half marathons, including the Great North Run, as well as a full marathon in Brighton and a 100km ultramarathon.
This challenge was inspired by Albie, the bravest little boy I know, and the son of two very close friends, Matt and Stacey.
Albie was diagnosed with Aicardi-Goutières Syndrome (AGS), a form of leukodystrophy. Witnessing the daily challenges faced by Albie and his family has been incredibly humbling. What makes their journey even harder is the lack of awareness around Albie’s condition, which often means families like theirs do not receive the support they need and truly deserve. That reality is what makes this cause so close to my heart.
There is an overwhelming sense of helplessness that comes with watching someone you care for face such enormous challenges. While I cannot change Albie’s diagnosis, I can do something meaningful — by raising funds and awareness for this incredible cause, and in doing so, support Albie, Matt, Stacey, and so many other families walking a similar path.
By running, fundraising, and sharing Albie’s story, I hope to shine a light on these rare conditions and help make a difference where it is so desperately needed.
