The cheeky boy in the picture, is Ben. He is 6 years old and is the son of our good friends Lisa and Alex. When he was 4 years old, Ben’s family were given the life-changing news that Ben 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.

I can still remember the exact moment when Lisa and Alex told me the news and I can’t begin to imagine how difficult its been for them to come to terms with.

But this isn’t a sob story… This is a story about making one young boy’s life as full and as special as possible.

To that end, I’m using 2020 as a year to try and raise as much money as possible to help with the essential adaptations that Alex and Lisa need to make to their home for Ben. I know people are used to these sort of emails asking for sponsorship to run a marathon or shave their hair, 😊 so I want to do something a bit different, I want to do a year of challenges. One a month, starting in January and including things like;

Night time trail run

Triathlons

Club to pub swim

Night time Henley Regatta course swim (2.1k upstream)

Tough Mudder

Half Marathons

Thames long distance paddleboard

There will also be some funny/embarrassing ones thrown in like a top to bottom speedo snowboard run, boxing day speedo swim and general challenges wearing only speedos (see a pattern here?).

I’m going to be documenting my monthly challenges on the @BenvsDuchenne Instagram account and keeping people updated on the money we’ve managed to raise for this wonderful little dude so please don’t forget to click follow.