Last year my super-dooper-fun-nephew & godson Henry was diagnosed with Duchenne muscular dystrophy (DMD) at the age of two and a half.

Needless to say this utterly sucks, and has completely changed my outlook on most things.

DMD is a rare, progressive and life limiting muscle-wasting disease effecting approximately 2,500 people within the UK, most of whom are boys. It is caused by a mutation in the gene that produces 'Dystrophin' – a protein which keeps muscle cells intact and able to repair themselves. Dystrophin is vital for all muscles within the body, including the heart and respiratory muscles.

The current expectation for children with DMD is that they will gradually lose the use of their muscles and become progressively disabled. Typically children are wheelchair dependent between the ages of 8-12 years old. Now whilst i'm sure I'd make a fantastic personal wheelchair chauffeur, unfortunately their life expectancy is also grossly shortened, and they are only expected to live into their 20s or 30s. Ultimately, Duchenne's causes respiratory and cardiac failure with many boys requiring a ventilator to breathe in their later years. There is no cure.

Duchenne UK is a charity whose aim is to support these children by fundraising towards vital research and clinical trials for treatments to improve symptoms, and hopefully one day, find a cure. Currently the only available treatment in the UK is steroids, which aim to slow down progression of the disease.

We as a family want to use this platform to raise awareness of DMD and to be able to support Duchenne UK in the fight against this awful disease. We're determined to give Hen the best quality of life he can have for the time that we have together. By fundraising we want to improve the quality of life for children with DMD and maybe one day, cure future generations of this devastating condition.

So what can you do? Well give Duchenne UK all your hard earned cash of course! And if the cute photo of Henry about to cover me in ice-lolly isn't enough for you, i'll be slugging around the Edinburgh Marathon in May to properly earn your donations.

Further ridiculous sporting events are on the horizon... watch this space (or pre-emptively set up a regular donation? It's up you!).