Harry's Story

Harry was diagnosed with Duchenne Muscular Dystrophy at age 6 in 2020. Duchenne is a life limiting genetic condition which affects 1/3500 boys per year. The condition means that muscles can't repair growing weaker overtime. This means that Harry will slowly lose the ability to walk, lose the ability to give hugs (which are the best), to speak (can happen), to feed himself or to swallow and will eventually have to be ventilate 24 hours a day. Life expectancy for Harry could be anywhere between mid teens to early twenties or maybe a few years extra if he is lucky. Harry takes steroids everyday to try and preserve his muscles for longer.

Harry loves cycling on his trike and you may see him sometimes out and about on Oakley Vale. Harry has been going to America for a treatment due to the Charity Fight for Alfie. Each treatment, travel costs and accommodation is between £10000 to £15000 each visit per child every four months. These visits have massively helped to slow down the progression of his Duchenne. Due to his treatments he has better mobility at this age and can still do a lot of things that we were told that he might not be able to do at age 9.

Cycling is one of the few things that Harry is allowed to do as it is low impact on his muscles. Harry wants to do something to help raise awareness and raise money for the charity Fight for Alfie so that he can continue his visits to America and keep moving for as long as possible.

On the 29th July, Harry, Stephen his Dad and Lucy his Sister will be cycling round Oakley Vale. This will be a two mile cycle. So please support Harry's magic miles. No matter how big or how small your donation will be greatly appreciated and will go far to supporting Harry and a fantastic charity.

The Charity

Fight for Alfie formed as a result of Alfie's diagnosis. Colleen & Jamie, Alfie's parents, felt they needed to do all they could to save their child's life. Through the years, the charity developed & gained a greater presence within the community. We opened our arms to help & support other families going through the same.

With the use of funds, acquired by fundraising and public donations, we are able to help those affected by Duchenne Muscular Dystrophy with the provision of aids and support to help them access trials & improve their lives.