Advertisement

  1. ITV Report

Mother welcomes decision to fund spinal muscular atrophy treatment for daughter

Melissa Bolt with her daughter Abi Photo: ITV Meridian

A mother from Kent, with a teenage daughter who suffers from a rare muscle wasting disorder, has welcomed health officials' decision to make a drug that treats the condition available on the NHS.

Melissa Bolt, who lives the Isle of Sheppey with her 15-year-old daughter Abi, has been pushing for Spinraza be made available through the health service

Spinraza is now available on the NHS for people living with spinal atrophy Credit: ITV

Clinical advisers had initially rejected the drug - which potentially costs hundreds of thousands of pounds per patient - saying its long-term benefits were questionable.

Today NHS England announced it will fund treatment for hundreds of adults and children, like Abi, who are living with Spinal Muscular Atrophy.

It announced it had negotiated a deal with a company that makes the drug. It's a decision that Abi's mother has welcomed.

Within the next few weeks the 15-year-old will receive her first spinal injection of Spinraza - on the NHS.

The drug has the capability to tackle the disorder that leaves Abi struggling to move, breathe and swallow.

"I'm just thinking of the endless possibilities of what I can do once I've got this drug. Being able to lift your arms up above your head, being able to brush your hair. Being able to just be a normal teenage girl".

– Abi Bolt

Activists, who have been campaigning for the NHS to provide the drug, believe it will help patients struggling with the condition to become more independent.

"Access to this drug means some people can breathe better, some people can swallow food independently, some people will be able to use their fingers to move wheelchairs around which they can't do at the moment."

– Dr Gennadiy Ilyashenko, Co-founder, Treat SMA
  • Watch the full story from our reporter John Ryall