Charlie Hancock
Charlie runs the London Marathon for Action Duchenne
Fundraising for Action Duchenne
Story
Why am I running?
I am running the London Marathon for Regan, a 12 year boy who is living with a disease called Duchenne. I got to know Regan and learnt about Duchenne through his mother, Rachel, a close family friend. Regan was diagnosed in June 2008 (just after his 3rd birthday) and like all those living with the disease, his muscle function will progressively reduce until round the clock care and artificial ventilation to help him breathe will be required.
About Duchenne
Duchenne is the most severe form of Muscular Dystrophy, a genetic muscle wasting condition, which affects approximately 2500 people in the UK today. It is X chromosome linked meaning that over 99% of people with Duchenne are male (though mothers can be carriers). It is caused by a mutation of the dystrophin gene, which is a protein, and without it the muscles are severely weakened.
More about Regan
Supported by an immensely positive and proactive family, Regan is given every opportunity to enjoy the best possible quality of life. In between weekly hospital visits, check-ups and the increasingly difficult physical challenges that come with living with Duchenne, Regan is full of energy and determined to live life to the full. Like many 12 year old boys, he is passionate about football and is a key member of the Wessex Warriors Powerchair Football Team, where he recently scored all of their 5 goals in their 5-1 win. He is also a very keen football mascot. His most recent time as a mascot came when Bournemouth played Arsenal - a very proud moment, as pictured above. Yet despite his energy, enthusiasm and love of life, there is no cure for Duchenne.
Why Action Duchenne?
Action Duchenne has been and will continue to be a huge help to both Regan and his family. Founded in 2001, it is a patient and parent led organisation that seeks to improve the lives of all those affected by the disease whilst also working with experts to try and find a cure for the disease. They do this by
- Funding the best and most ground breaking research into Duchenne
- Campaigning for the best standards of care to be available for everyone living with Duchenne
- Running innovative education and transition programs
- Sharing best practice and providing vital information for people living with Duchenne and wider community
And things have certainly improved; Duchenne has a much better prognosis than it did 20 or 30 years ago. More people are living longer, fuller lives.
However, this condition still severely affects people’s lives, and there is much work to be done to try and find a cure. Therefore any donations to help support this fantastic charity would be enormously appreciated.