Parents celebrate new spinal muscular atrophy therapy

The family had been fundraising for treatment in the USA

A couple said they cried when they heard the NHS had approved a treatment which could keep their baby alive.

But East Yorkshire couple Rosie-Mae Walton and Wes Powell, said it was too early to know if their son Marley, aged 10 months, would be eligible for gene therapy Zolgensma.

Marley has type 1 spinal muscular atrophy (SMA) and the family have been fundraising for treatment in the US.

Zolgensma, which has a list price of £1.79m, was approved on Monday.

The one-off treatment could become the most expensive drug approved by the National Institute for Health and Care Excellence (Nice) and has been described in the British Medical Journal as "the most expensive drug course of treatment ever" .

Ms Walton, from Driffield, said: "Our initial reaction when Zolgensma was approved by NHS England was shock, and we did cry with being so overwhelmed.

"It's so amazing that it's been approved and can help so many other babies that are diagnosed with SMA."

'Deserves the world'

The condition causes muscle weakness and affects movement and breathing, meaning most babies who have it do not live past two years without intervention.

Children with the condition often need breathing assistance or a feeding tube.

It is not yet clear if Marley would be eligible for treatment, Ms Walton said.

"We hope that he will be. It would mean the absolute world to us if Marley was to get Zolgensma treatment," she said.

"He deserves the world and we hope we can give him the treatment to give him the life he deserves and live his life healthier."

Fundraising efforts for his treatment in the US included a 24-hour climb of England's highest mountain, Scafell Pike in Cumbria, by photographer Joe Giddens.

The family said if he were to receive the treatment on the NHS the money raised could be used to pay for special equipment and physiotherapy.