Coventry mum's bid to get pioneering drug for five-year-old son

A Coventry mum travelled to Downing Street in her bid to get the pioneering drug that could help save her sons life.

Jaspal Mann has watched on as her five-year-old son Kirath has battled against muscle-wasting condition Duchenne muscular dystrophy, which leaves many children in a wheelchair before their 10th birthday.

Problems with heart and lung muscles also mean that few with the condition currently live to see their 30th birthday.

The desperate mum, from Westwood Heath, joined other families from across the country and members of the Muscular Dystrophy Campaign as they handed over a petition to MPs and peers in Westminster calling on the NHS to end delays to a breakthrough treatment called Translarna.

The drug is the first ever to tackle the causes of Duchenne muscular dystrophy. It was approved in Europe in August and is currently available in France, Spain, Germany, Italy and Denmark.

However, NHS administrative issues have led to agonising delays for families in the UK.

Jaspal, 38, said: Kirath loves nothing more than talking to his friends about his favourite super heroes, dinosaurs and playing with his toy cars.

Simply put, Kirath just wants to be one of the boys. Although hes still mobile, his condition means that keeping up with his friends in the playground is a real struggle.

It is honestly heartbreaking to watch your little boy get weaker by the day.

Translarna makes us feel that there may be some light at the end of the tunnel but it is devastating to hear that the NHS has halted the assessment of this drug, which gives so much hope to families like mine, whose children are affected by this tragic condition.

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Coventry mum's bid to get pioneering drug for five-year-old son