Muscular Dystrophy: Corby family fight for access to Givinostat
The mum of an 11-year-old boy who is waiting to find out if he can access a new drug to treat his Duchenne muscular dystrophy (DMD) said her son talked about his fear of death.Harry, from Corby, Northamptonshire, was diagnosed with the incurable condition when he was six.His mother, Rosemary, said "he's talked about being scared of dying, which is heartbreaking, how do you ever answer this as a parent?" University Hospitals Birmingham NHS Foundation Trust, which is treating Harry, has been contacted for comment.
There are many types of muscular dystrophy which gradually cause the muscles to weaken, leading to an increasing level of disability.DMD is one of the most common and severe forms, usually affecting boys in early childhood. Many people with the condition will only live into their 20s or 30s.Harry's family believe the drug Givinostat could slow his decline, but said the hospital trust had not yet reached a decision on whether to offer the drug.
Harry's Dad, Stephen, said having access to the new drug would give him "an extra two years of mobility and an extra two years of life would come along with that".Mum Rosemary added: "This is it. Once he loses those muscles and he can't walk and he is in a wheelchair, there is no coming back from that, he will never walk again."Time very much is muscle, because every day he is getting weaker."
Harry's older sister Lucy, 13, also hoped Harry could access the drug."I can't imagine Harry being in a wheelchair or not being able to walk," she told the BBC."Just the thought of that makes me upset."I think it would be just amazing to see Harry really happy."
'Time is muscle'
Emily Reuben, chief executive and co-founder of the charity Duchenne UK, said: "Families across the country are asking for a free drug, which patients in Europe and the US are already accessing, that could keep our children living longer."Time is muscle, and we are urgently campaigning to convince hospitals to provide access to this free medicine."
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