Boy whose muscles are wasting away awaits decision on life-enhancing drug

Decisions have yet to be made about the spinraza drug Picture: LAURA BARBER (Image: Archant)

Whitehouse Community Primary pupil George Woodward is hoping that the drug Spinraza, also known as Nusinersen, will be available in the near future to help stabilise his illness.

His condition is continuing to worsen, as he has found he is unable to roll over and raise his arms as he used to be able to do. Soon, it will affect his ability to walk and get around.

However the National Institute for Health and Clinical Excellence (NICE) has recommended that the drug he needs is not approved for use on the NHS - even though it has been approved in other countries, including Scotland.

NICE has said it will continue to look for ways to reduce the cost of the drug, which costs around £75,000 per vial.

A final decision is due next week following NICE committee meetings.

But George's family, who have been waiting two years for a final decision on the medication, are not giving up their fight - with George and his cousins going to school this week wearing t-shirts emblazoned with the words: "Spinraza Changes Lives."

"We made the t-shirts ourselves. It was quite a rush job as we weren't given much notice of the committee meetings," said George's mum Laura Barber.

"The SMA community wanted NICE to know that we knew that they were having a meeting."

The family has also taken part in the Wear Your Hurt campaign, led by the TreatSMA group, to highlight that families are still fighting for the drug.

Ms Barber said that the reaction to the campaign had been positive.

"It was a massive response," said Ms Barber.

Whatever the result next week, Ms Barber said the family would not be giving up.

"Even if the decision isn't good we will not lay down and take it," she said.