Why isn't new drug available for our son? family take fight to Downing Street

A FAMILY from Poole calling for the NHS to provide a life-changing drug for their five-year-old little boy are taking their campaign to Downing Street today.

Luca Fernades has the muscle-wasting condition Duchenne muscular dystrophy.

Many boys with the condition need to use a wheelchair by the time they are eight or nine-years-old and problems with the heart and lung muscles mean few sufferers live to see their 30th birthday.

Armed with a petition signed by tens of thousands of people, Lucas parents Pedro and Joanne are heading to Downing Street calling for the government to make a new drug, Translarna, available to Luca and thousands like him.

The cutting-edge treatment is already available for boys in other European countries but the family says NHS administrative issues have led to agonising delays for people in the UK.

Mrs Fernades said: At the moment Luca has no idea what his life has in store for him. Now he runs, jumps, swims and cycles on his bike, oblivious to it all. However, Lucas condition is starting to affect him more and more each day and we are having to watch our beautiful boy slowly lose his strength.

To be eligible for the drug the patient must still be able to walk.

Mrs Fernades said: Everyday that Luca is not on Translarna, he could be losing precious time on his feet. This drug is now available in other European countries including Italy and Spain. NHS England must catch-up and make this treatment available for boys just like Luca here in the UK.

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said: Translarna is a long-awaited breakthrough. We must see an end to the delays in this drug reaching children like Luca who desperately need it.

We and families affected by Duchenne muscular dystrophy will be demanding action on Wednesday, for the many children who cannot afford to wait.

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Why isn't new drug available for our son? family take fight to Downing Street