Hartlepool mum speaks as muscular dystrophy sufferers set to benefit from drug

The mum of a Hartlepool youngster with a rare condition has welcomed news of a new drug becoming available for children on the NHS.

Saturday, 16th April 2016, 5:00 am
Luke Malcolmson with mum Jayne.

Health body NICE, for the first time ever, has agreed that children will be able to access a drug tackling an underlying cause of life-limiting Duchenne muscular dystrophy through NHS England.

Translarna could keep children with the severe muscle-wasting condition walking for longer.

Although Hartlepool youngster Luke Malcolmson, who suffers from Duchenne muscular dystrophy, does not have the strain of the condition which would be helped by the drug, his mum, Jayne, 44, said she is delighted with the news for the children who will benefit.

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She said it also gives fresh hope that other drugs, currently under trial, could become available to help Luke, seven, a pupil at Sacred Heart Primary School.

Jayne, said: “This is amazing news. That NICE has agreed to this drug being available from the NHS.

“It does give us extra hope that things are moving in the right direction.

“There are drugs in the pipeline, which could help Luke, so we keep positive.”

Duchenne muscular dystrophy causes muscles to progressively weaken because the cells break down and are gradually lost.

It affects just one in 3,500 males born in the UK and is currently an incurable disorder which causes muscle degeneration and eventual death.

Luke was just 18-months-old when he was diagnosed with the condition and since then his family has raised thousands of pounds to help fund research into the condition.