Over the last decade, with your generous help, we have raised more than £70,000 for Duchenne UK. Please click the links or read on to see why…

Who are we?        What are we doing?        Current challenges

Who has inspired this effort?

The cheeky boy in the pictures above, is Tom. He is actually now 16.  He is the son of our amazing friends Becky and Gary.  When he was 4 years old, just a few days after his little sister, Amy, was born, Tom’s family was given the life-shattering news that Tom had Duchenne Muscular Dystrophy.

Duchenne is a severe, progressive and currently terminal disease. It is a truly heartbreaking condition, in which previously physically able children experience gradual and permanent wasting of their muscles, eventually rendering them unable to move.  It is a genetic disease, which, because of the way it is inherited, primarily affects boys.   There is currently no known cure.  Those affected require a wheelchair by mid teens and usually die by their mid twenties, as their heart and breathing muscles become affected.

Tom is now unable to walk or sit up from lying down. He remains able to use his arms so has the limited independence of being able to feed himself. Time is now of the essence; once he loses the use of his arms, his quality of life will be enormously reduced. He and his family are having to face a desperately uncertain future under the ethos of “hope for the best but plan for the worst”.

However, there is hope!

Clinical trials are underway looking at the potential of several different medications to slow the progression of this very distressing disease, or to stop it in its tracks entirely.  But this research can only continue with the input of decent amounts of money.  Since it is estimated that a significant breakthrough is imminent, we are in the wonderful position of being able to potentially make a real difference, right now!

If you would like to donate, click on the JustGiving icon on the right-hand side of this page! (Scroll down if viewing on a mobile).