About Harrisons Fund
Harrison's Fund is named after our eldest son; a charming and cheeky little man. He's single-minded when he's set himself a goal: from cutting Daddy's hair to being a perfect gentleman at Aunty Charlie's wedding. Everyone who meets him loves his winning smile, his engaging character and the devilish twinkle in his eye.
To most people Harrison looks completely healthy. But on the inside, our powerful little boy is struggling. His muscles are deteriorating at an alarming rate. Because he has Duchenne Muscular Dystrophy.
By the time he's a teenager Harrison will lose the ability to walk. Eventually he'll lose all muscle function in his body. Like all boys with Duchenne he'll die in his late teens or early twenties from heart or respiratory failure.
One of the hardest things about being a parent of a child with a life-limiting disease is knowing that, one day, they won't be able to keep up with their friends. Or race around at home, like Harrison does - he adores chasing after his younger brother, William.
Our goal is to stop Duchenne, or at least find a way to slow it down significantly, before it has a chance to dim the twinkle in Harrison's eye. Harrison was diagnosed in January 2011, a day that we will never forget - one blood test changed everything. Numb, we had to start down a path we never dreamt we would have to follow. We had to take those first steps that no one is ever taught. Our immediate thoughts, like all parents in this position, were to secure the best possible care for Harrison, and we are lucky to be close enough to the fabulous teams at Great Ormond Street Hospital.
Having spoken to some of the best organisations in the world fighting Duchenne, it's clear that for the very first time there may actually be a chance of a major breakthrough. Over the past few years, scientists have made giant strides in gene therapy and molecular medicine, and pharmaceutical companies have begun investing in research that may well bring Duchenne therapies to market.
We need your help to take advantage of this momentum. And make sure that there doesn't need to be another Harrison's Fund.
Alex and Donna Smith, Harrison's mummy and daddy
About Duchenne
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.
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