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Luca Fernandes starts drug treatment for muscular dystrophy | Luca Fernandes starts drug treatment for muscular dystrophy |
(about 1 hour later) | |
A six-year-old boy with an incurable muscle-wasting condition has begun treatment following a two-year fight by his family. | A six-year-old boy with an incurable muscle-wasting condition has begun treatment following a two-year fight by his family. |
Luca Fernandes has Duchenne muscular dystrophy (DMD), which could leave him unable to walk by the age of 12. | Luca Fernandes has Duchenne muscular dystrophy (DMD), which could leave him unable to walk by the age of 12. |
His parents have been campaigning for him to be given Translarna - a treatment that could allow him to lead a normal life for much longer. | His parents have been campaigning for him to be given Translarna - a treatment that could allow him to lead a normal life for much longer. |
They said the sachets of the drug were "like powdered hope". | They said the sachets of the drug were "like powdered hope". |
Luca, from Poole in Dorset, is one of 50 patients in England to trial the drug, which costs more than £200,000 a year and works specifically on the legs to slow the muscle-wasting effects of DMD. | |
He will be allowed to use it for as long as his legs continue to work. | |
Nice - the National Institute for Health and Care Excellence - announced in April that the drug would be made available amid promising signs it could delay the loss of walking for up to seven years. | Nice - the National Institute for Health and Care Excellence - announced in April that the drug would be made available amid promising signs it could delay the loss of walking for up to seven years. |
His mother, Joanne, said: "We know he is getting the best that he can get - there is nothing more we can do. We've fought so hard for this drug. | His mother, Joanne, said: "We know he is getting the best that he can get - there is nothing more we can do. We've fought so hard for this drug. |
"Our hope is, it's going to give him more time on his feet, more time out of a wheelchair, its going to allow him to keep playing football, go out in the playground with his friends and lead a normal life for much longer." | "Our hope is, it's going to give him more time on his feet, more time out of a wheelchair, its going to allow him to keep playing football, go out in the playground with his friends and lead a normal life for much longer." |
What is DMD? | What is DMD? |
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