Thanks for taking the time to visit my JustGiving page.

I haven’t researched it but I would guess that the majority of fundraising pages created on Just Giving are for physical challenges of one sort or another.  Anyone knowing me would realise that is quite possibly the very last thing that I would ever even contemplate!  I have thought long and hard though about ‘doing’ something to raise funds for the charity that I am passionate and deeply committed to.  So here I am setting this page up as a Birthday for Birthday, again this year.

The why is very easy, I’m Grandma to seven, beautiful, very special children, the offspring of my 2 sons and 2 daughters.  Even before I met my husband Andrew I knew I wanted at least four children, thank goodness he fell into line on that wish.  Alex, JJ, Charlotte and Emily duly arrived and I have always felt very blessed to have a close healthy family, always there for each other, spending time together, always without fail coming home to celebrate everyones birthdays together at home. 

When Harrison was diagnosed with Duchenne Muscular Dystrophy in January 2012 everything changed forever.  My heart has always gone out to others facing life changing situations but until it happens to your own nearest and dearest I don’t believe anyone can truly know what it feels like.  I don’t know what Alex truly feels like but I do know that as a Grandmother it is like a double dose, you hurt for your grandchild and you hurt for your son too, because really there is little you can do for either of them other than being there and supporting.

In the last year Harrison has lost the ability to stand independently, or move himself from his wheelchair to a seat or his bed. He can no longer take himself to the toilet or take a shower, he has lost that last bit of independence.  He knows how much weaker he is getting and realising it is not just his legs that are getting very weak. 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.

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.

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 son 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.  I am so proud of all that Alex has done in raising awareness of the disease, and creating a large supportive community of fundraisers who together have made a real difference.

I have decided to give up my birthday again this year in the hope that Harrison will have one extra birthday.  My birthday is June 7th and whichever weekend I choose to have my family birthday BBQ it is always sunny and warm.  If you want to have an outdoor event choose my birthday weekend because it hasn’t rained for at least the last thirty years!  This year we will still get together as a family because that is important to us but there will be no presents or card for me.  Last year you donated an incredible £870  and so cheekily I'd love to ask if again you might be incredibly generous. 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 for us oldies 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.

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