Dudley mother continuing to fight for treatment for her daughter's rare muscular disease

Hannah McKeown and her daughter Tiegan, from Gornal, joined a protest in Manchester last month 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 approved in December 2016 in the USA and in the European Union in May 2017.

Campaign group TreatSMA organised the 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 aged one 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: "We've done basically everything they asked, we were outside at the protest all day in the rain and they still haven't given us the decision.

"It's so frustrating as you can imagine, we're just waiting and watching videos of people who have had the treatment and we haven't had a yes or a no.

"People can have the treatment in Scotland, it wouldn't be ideal moving there but it has crossed our minds.

"We're in limbo because they're not saying yes or no.

"Emotionally it's been a very hard time for us at the moment.

"As well as a protest there was a vigil and prayers were said as children have lost their lives waiting for this drug.

"We can't see what the hold-up is."