The Diagnosis

In 2020, my world fell apart and I was left devastated when my son Harry was unexpectedly diagnosed with Duchenne Muscular Dystrophy (DMD) at age 6. There are still no words to describe the pain that we feel as a family and knowing what the future holds for Harry. The day of the diagnosis will haunt me forever, the words of the Doctor and the booklet to bring home and read. The worst part of it is knowing as a Mother that there is no cure and that only by giving Harry steroids can I slow down the progression of this monstrous illness but only by a matter of months. I will never be able to put my arms around Harry and tell him that it will be okay. That the only future for Harry is one of endless medical tests, operations and interventions. My world is still full of panic and fear Duchenne is a terminal and life limiting condition with the average life expectancy still being 21. Some boys do live longer but a lot also pass in their mid to late teens between 15-19. However, supporting the ability for Harry to be 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 nine 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. We 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.

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 challenge

Swimming is one of Harry's favourite activities and he loves having his lessons weekly at the Corby pool. Due to his love of swimming Emma, Ellie Laura and I are aiming to swim the distance between England and France and back in no more than a week Saturday to Saturday at the Corby pool. Due to work we will be looking to swim for about three hours a day . We will be swimming the shortest point so we will be doing just over three miles a day. My motivation is to help Harry and other boys and girls with Duchenne a life limiting condition that will result in an early grave and complete paralysis starting with the loss of the ability to walk. Duchenne is caused by a genetic fault which means the dystrophin that is usually made which repairs muscles is not made causing muscles to break down. At the moment Harry knows he has tired legs but doesn't know the full extent of his illness. Here's hoping that he never has to know. So please support us as we believe a world without Duchenne is possible.

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.