Just over 12 months ago I decided to give up my birthday, which I love, and instead ask people to donate some money and raise funds for the charity that is incredibly important to myself and my family. We were able to raise £250 last year and this year I would love for us to raise a similar amount or maybe just a little bit more.

The why is very easy,  Harrison, my nephew was diagnosed with Duchenne Muscular Dystrophy in January 2012 which is a ridiculously horrible and cruel disease. 

Duchenne Muscular Dystrophy is 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.

Harrison relatively recently has reached that awful  point where he is now  unable to get out of his wheelchair and has lost another piece of his independence. What a terrible disease this is, when boys should be getting stronger and more independent, looking to the future, what they might like to be when they are grown up and instead Duchenne robs them of independence, their dignity, their social life, their future.  This foul disease has to be beaten and very very soon.

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.

Harrison’s Fund was started by my brother Alex in order to get the most funds possible into the hands of the very best researchers and scientists in the world in order to get new treatments into clinical trials to give all Duchenne children the real possibility of living with Duchenne rather than being the last generation to die from Duchenne.  Alex has done an incredible job in raising awareness of the disease, and creating a large supportive community of fundraisers who together have made a real difference.

I am 40 this year and I have decided to give up my birthday this year and will do so every year from this point on until we find a cure. My birthday is on July 20th and I will still get together with friends and family but there will be no presents or cards for me.  So if I am lucky enough to normally get a present from you, then thank you but can I please have a donation for Harrison’s Fund instead and if, as is normally the case you might just send a card then please a little donation instead would be greatly appreciated.  And if it is normally just a Happy Birthday on Facebook then could I please ask if you can spare a pound or two for Harrison’s Fund as well.  Every single penny counts and every single penny raised will make my non birthday still a very happy day.

So if you have read to the end of this, thank you, thank you, thank you.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.