Welcome to our End Duchenne fundraising site.
(Please scroll further down to read about who we are and what we are doing)
Covid has sadly put a stop to our next adventure, which was to be a long distance trail for our ten year old, Nate. But as soon as feasibly possible, we will be back out and hopefully raising awareness and funding. Watch that space!
Hoping everyone is ok out there and staying safe.
I’m often asked about our Pennine Way challenge blogs, so for anyone interested, they can be found here
For the last six years, with your generous help, we have raised more than £56,000 for Duchenne UK. Please click the links or read on to see why…
Who has inspired this effort?
The cheeky boy in the pictures above, is Tom. He is 11. 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 10 -12 years old and usually die by their late teens or early twenties as their heart and breathing muscles become affected.
Tom is now beginning to struggle with many physical activities. He can no longer climb stairs and sometimes finds it difficult to get up when he has fallen. His family completed a crowdfund campaign to raise the £12,500 they needed to buy him an off-road wheelchair to enable him to enjoy the countryside around his home with his family and his new assistance dog. They lived in a caravan for more than two years as they rebuilt their home to cater for Tom’s current and future needs. They 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 only 5 to 10 years away, we are in the wonderful position to be able to 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).