THE CHALLENGE
For most people, running a marathon is a lifetime achievement to cherish and be proud of, but for me this is only the beginning. Next year i will complete an Ironman triathlon, well known as the toughest single day challenge you can undertake – a 3.8km swim, a 180km bike ride and a 42.2km run. Many people do not finish, some even die, and I will also be carrying my 35kg disabled son Harrison the whole way, hauling him in a catamaran behind me as I swim, pulling him in a trailer as I cycle, then pushing him in a wheelchair as I run.
And if all this were not enough, I also intend to do it in a world record time.
And why?
Because my son does not have time, as he is dying from a fatal muscle wasting disease, Duchenne Muscular Dystrophy, which affects 1 in 3,500 boys.
This is the challenge of a lifetime. I will be Harrison’s heart, lungs, legs and spirit. This is me pushing myself to the edge for my dying son, because I can and my son cannot.
Will I be the Greatest Ironman?
THE DISEASE
Duchenne Muscular Dystrophy is a stinker of a disease. It's the most common fatal genetic disorder to affect children around the world. If you've got it, you can't produce dystrophin, a protein you need to build up your muscles. As a result, every muscle in the body deteriorates. At the moment there is no cure.The facts about Duchenne are inescapable:
-
Duchenne Muscular Dystrophy is 100% fatal
-
Most kids with it die in their late teens or early twenties
-
Most with it are usually in a wheelchair by the age of 12
-
It leads to respiratory failure, heart failure, and other debilitating orthopaedic complications
One in 3,500 boys is born with it, and in the UK 2,500 kids has it at the moment. You can have it, no matter where you are or what your ethnic background is. A third of all cases start in the womb, with no warning before the baby is born. Girls can also get Duchenne with around 1% of Duchenne births being female.Although we know a lot about how Duchenne is caused, current treatments are pretty limited. Steroids and daily stretching are what most doctors recommend, but they have their drawbacks and don't prevent debilitating muscle contractures.