A Beith woman with a rare genetic condition has called for a revolutionary drug to be made available on the Scottish NHS.

Bethan Broster, 44, has Spinal Muscular Atrophy (SMA) Type 2, an inherited muscle-wasting condition.

Spinraza is the first and only treatment for patients with SMA. Without access to the drug, life expectancy for those with SMA Type 1 is rarely longer than two years.

The treatment is also holding promise for people with other forms of SMA.

The Scottish Medicines Consortium (SMC) will make its final decision on the approval of Spinraza on May 7.

It follows a meeting which took place early this month, where families affected by the condition made a final plea to the SMC to approve Spinraza for use on the NHS in Scotland.

Bethan said: “When I heard about Spinraza, I was given a new lease of life. “For so long, people with SMA have had to live with the knowledge that there are no treatments out there. It’s easy to lose hope when the future looks so bleak.

“But now, there is Spinraza. It’s not a cure, but it could improve my mobility and give me a better quality of life.

“Having more muscle strength would be a dream come true.

“I can only imagine what just a little bit more independence would allow me to do.

“If Spinraza is not approved, it would be utterly devastating. Families are crying out for this treatment. It’s our only hope.

“The SMC must do the right thing and make the treatment widely available.”

Muscular Dystrophy UK is warning that unless the SMC approves Spinraza, families who could benefit from a proven treatment will be made to suffer needlessly.

Robert Meadowcroft, Chief Executive at Muscular Dystrophy UK, said: “SMA can be devastating, and Spinraza offers families a rare glimmer of hope.

“Its most severe form means parents have to see their child gradually lose their ability to crawl, move, breathe and swallow while there is a treatment out there which could help.

“Nothing can prepare you for the emotional turmoil this causes.

“Spinraza is not a cure, but it can buy families time to spend with their loved ones.

“Some children who have received Spinraza have seen their muscle strength improve and have already lived long enough to crawl, and even walk.

“The SMC has a chance to hand patients the lifeline they so desperately need.”