My name is Leo and I'm 11 years old. My dad was diagnosed with a leukodystrophy - HDLS - in 2020. This is a rare brain disease which affects many, but very few people know about it. It is very sad when someone is diagnosed with a leukodystrophy. They can no longer do what they used to do and they need the help of those around them with a lot of things. Life becomes very difficult for those who suffer with it, and the families also have a hard time understanding the changes that happen to their loved ones. I would like everyone to know about this disease so that more people can be helped and maybe for the world to understand and be more kind. I have the best dad in the world and it makes me very sad that he has this disease. Because of it, my dad can no longer play rugby with me or go out cycling. Instead, he's needing more and more help with everything that he does from those around him. I would like to help him and others as much as I can so please sponsor me. My aim is to do a series of runs in order to complete a marathon distance before the end of half term. My mum is helping me and I know she will struggle with all the running!

Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity. Your donations make our work possible.