Spinal muscular atrophy
By Jessica Murphy
BBC News, Toronto
The nine-year-old twins with muscular atrophy have only recently taken their first steps.
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BBC News England
Parents with children who have a muscle-wasting disease are calling for a drug that can help maintain independence to be offered by the NHS in England.
Families calling for Spinraza to be approved to treat people with spinal muscular atrophy (SMA) are set to protest at a meeting later.Copyright: Katie Prescott
They include Katie Prescott, whose daughter Heidi, 11, has had the condition since birth, but was not diagnosed until she was three.
"She can't walk on her own, she has to hold on to me and can only take a few steps," Mrs Prescott, from Wolverhampton, said.
The drug has not been recommended so far because of uncertainties over its long-term effectiveness and high cost.
Parents say the drug could be life-changing.
BBC Midlands Today
An MP has urged the government to help an ill 10-year-old girl get access to a life-extending drug which will be available in Scotland later this year.Copyright: BBC
Eleanor Smith (pictured), who represents Wolverhampton South West, told the Commons that Heidi Prescott was born with a rare muscular-wasting disease called spinal muscular atrophy.
She told MPs that her constituent could be helped with a new drug called Spinraza which will be available in Scotland from April.Quote Message: She is 10 years old and her condition is worsening. Heidi is now losing the ability to walk and is spending most of her time in a wheelchair." from Eleanor Smith Wolverhampton South West Labour MP
The prime minister said the UK's health watchdog would meet in March to consider a new bid to have the treatment approved from the firm behind the drug.
Lucy Frost's six-year-old son has spinal muscular atrophy, which affects his mobility, but she says his life could be changed by the drug Spinraza.
A woman from Devon says she is frustrated that the only drug available to help her rare genetic condition is being denied from her.Copyright: BBC
Sue Tucker from Braunton lives with spinal muscular atrophy, which weakens the body and eventually makes it hard to breathe and swallow.
She says a recent decision by the National Institute for Health and Care Excellence (NICE) not to approve medication, which is working for people across America and parts of Europe, is soul destroying...
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