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 there mid to late teens between 15-19.  However, supporting the ability for Harry to go to America as 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 seven 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.  

The challenge - Jump the Empire State building 

On October 23rd I will be at the Good conditioning gym and I will be jumping on and off a bench (box jumps) until I have jumped the height of the Empire State building which is 443m. On Harry's diagnosis day we were given a list of things that Harry should not do as they caused faster damage to muscle. One of the things on the list was jumping and a ban on trampolines and bouncy castles. Harry has always found jumping from standing hard. He never really mastered hopping or skipping. This challenge is about making people aware of the confines of Duchenne but also about the trips to America and the hope for the future. The money raised from this challenge will cover the costs of the study and ensure that it remains financially viable. A more detailed breakdown of the costs and how the money is used from this challenge is available on the website for fight for Alfie 

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.

Information about 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.