Mum joining campaign march for daughter’s right to drug
A mother and daughter from Dudley are joining a national march against the lack of treatment for a rare muscular disease.
Hannah McKeown and her daughter Tiegan, from Gornal, are joining a protest in Manchester on Wednesday over the lack of treatment options for spinal muscular atrophy (SMA).
SMA is commonly known as the biggest genetic killer of babies and infants, is a progressive disease of motor neurons that causes the early death of nearly 50 UK children a year and leaves hundreds more progressively losing muscle function, resulting in permanent paralysis.
The National Institute of Health and Care Excellence (NICE) advised that nusinersen, which is marketed as Spinraza, should not be made available through the NHS, despite it being the only effective drug to combat SMA.
The drug was aproved in December 2016 in the USA and in the European Union in May 2017.
Campaign group TreatSMA have organised a protest march outside the NICE office in Manchester to make Spinraza available on the NHS.
Tiegan, aged nine, was diagnosed with the condition when she was one-years-old and has gradually lost movement in many of her muscles as disease takes hold.
Due to the recommendations of NICE, the Roberts Primary School pupil is refused treatment.
Her mother Hannah, aged 32, said: "It's devastating, you can see the progress in other countries, it's so frustrating.
"Her condition has declined in the two years since the USA approved the drug, so if she had it she wouldn't have lost as much movement in her arms, it's heartbreaking.
"I think the protest will make an impact, they are already talking about the drug which is a start, so hopefully it means that they are thinking about using it.
"It's life saving.
"I care for Tiegan full-time, there's no time to work, and I have a one-year-old too.
"I get up 10 times a night to reposition Tiegan, it puts a strain on the family and my relationship with Shaun.
"It's not nice but we make the best of it.
"There is something profoundly wrong if this drug is not being pushed through, they can't let our children deteriorate and die.
"The earlier they get it the better."
