Wednesday, May 08, 2013 3:33:41 PM
Harrison Smith was born with duchenne muscular dystrophy, which leads to loss of movement and, eventually, paralysis. Sufferers have a life-expectancy of around 25.
There is no treatment and no cure, but his father Alex has given up his job to dedicate himself to finding one. He hopes to achieve this by funding research through his charity Harrison’s Fund.
A campaign for the charity, launching today, features a picture of Mr Smith and Harrison and carries the slogan: “I wish my son had cancer”.
Explaining the advert, which appears on page 20 of the Standard, Mr Smith said: “For many people the notion of even wishing your child had cancer would be tough to understand, how could I wish a terrible disease on my own child? But the brutal truth is that there is a treatment in most cases. With duchenne there is no treatment, no cure, it’s 100 per cent fatal and at the moment one day he will be dead.”
Mr Smith, from Cobham, Surrey, who has another son William, four, with his wife Donna, 37, said when Harrison was first diagnosed in 2011, “the world turned upside down”. He said: “Coming to terms with a child that has a life-limiting condition, it’s not what we had mapped out for ourselves. We were also worried that we could have two sons with duchenne.
“I’m a very determined guy and I can’t accept being told, ‘Look after your son, give him the best life you can, he is going to die.’ I couldn’t accept that solution.”
As a result, he decided to give up his job in company branding to start a charity named after Harrison in a bid to find a practical solution for him and other sufferers.
Duchenne muscular dystrophy, which is caused by a genetic mutation in the dystrophin gene located on the X chromosome, affects around one in 3,500 boys in the UK.
Mr Smith said that at the moment Harrison has to attend Great Ormond Street Hospital regularly for analysis and has daily therapy at home.
He said his boy was not aware of the severity of his condition, which he refers to as “poorly muscles”.
In the first year the charity raised nearly £200,000 which is helping to fund research into treatment of the condition. Mr Smith is training to do an iron man competition in Barcelona and a team of 15 are going on a fundraising expedition to Everest.
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