Dorset

Luca Fernandes starts drug treatment for muscular dystrophy

Luca Fernandes drinking his new medication
Image caption Luca has to drink the medication, which comes in powdered form

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.

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".

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.

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."


What is DMD?

  • It is a form of the muscle-wasting condition muscular dystrophy
  • It affects about one in 3,600 boys
  • It results in muscle degeneration and premature death
  • It is caused by a genetic mutation
  • Females are rarely affected
  • Symptoms usually appear in boys aged two or three
  • Most patients are wheelchair-dependent by the age of 12
  • Average life expectancy is about 25 years

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