In 2020 two colleagues from work recieved devastating news, when their son Harry was diagnosed with Duchenne Muscular Dystrophy (DMD) at age 6. Duchenne is a terminal life limiting condition with no cure with a life expectancy of only 21 years of age!

Harry is part of the Project Care for the Rare (funded by Fight for Alfie) could give us all renewed HOPE for the future.  

At the moment Harry is a lively eight year old boy with a large personality.  He loves playing pirates, Mario, building dens and dreams of being a policeman and owning Huskies one day. Rosemary and Stephen are really grateful to the charity Fight for Alfie for setting up the Project care for the Rare and need your support in raising funds for this charity to ensure that Harry and the other boys can be part of this new study.  

We have seen some fantastic fundraising attempts so far and want to contribute through raising money by running our first Marathons!

Information about Duchenne:

Duchenne is a genetic disease (non contagious) that causes muscle weakness and wasting and is the most common form of Muscular Dystrophy. It is not routinely screened for during pregnancy and can be sometimes caused by a random genetic change as well as being hereditary.  DMD almost always affects boys and affects people of all backgrounds regardless of income race or culture. 

DMD means that Harry was born without the ability to produce dystrophin, a protein that is vital for muscle strength and movement.  Dystrophin makes muscles stronger protecting and repairing muscles but without this protein muscles get weaker and damage more easily.  The diagnosis means that Harry and other boys with Duchenne will need a wheelchair as he will lose the ability to walk between the ages of (9-13) and that he will gradually need help with other things such as breathing, swallowing and eating as the disease progresses and affects his heart and lungs more.

The Charity- Fight For Alfie

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.