AGONY FOR FAMILY Dying son can have £280k wonder drug for free but there isn’t a bed for his treatment

DYING toddler William Storr is being denied a drug to help keep him alive even though he could get it for FREE.

The two-year-old’s shocking plight has arisen because the NHS lacks the staff or beds to administer it.

William, who has a healthy twin brother, has a cruel genetic musclewasting disease that attacks his flesh.

He has type 1 spinal muscular atrophy, which means he can move only his hantds and toes.

A wonder drug that could hugely improve his mobility and prolong his life has been offered free by the drug firm after successes in the US.

But charities claim only a third of children eligible for Spinraza are receiving it in UK hospitals because of cash constraints in the NHS.

It means at least 70 babies, including William, are being denied a shot at survival.

His mum Kerry, 37, said: “It’s heartbreaking knowing there is something out there that doesn’t cost a penny and could dramatically help William, yet he can’t have it because of the state of the NHS.”

Like every mother Kerry will never forget the moment William’s twin Matthew took his first steps as his brother giggled in delight.

But the moment was bittersweet. As Matthew pulled himself to his feet, William could only watch.

William has difficulty breathing and can’t swallow. He also needs regular suction to stop secretions from going into his lungs, which would risk pneumonia or even death.

Kerry said: “We try to celebrate their different successes. We are thrilled if Matthew speaks a new word. And we’re overjoyed on William’s good days when he might rotate his hand.

“It’s hard but we get lots of smiles from William. He’s a very happy, laid- back little boy and very intelligent.”

William has already defied doctors by living past his second birthday last month, an anniversary 95 per cent of children with SMA don’t see.

The £280,000-a-year medicine he so desperately needs could transform his life. Spinraza produced such spectacular results during trials in America that the manufacturer made it freely available to children in England last August, until it is approved by the Government’s National Institute for Health and Care Excellence.

Parents of children who have received the drug from birth report that their children have met expected milestones. Kerry and husband Jason, 47, asked Sheffield Children’s Hospital to give it to William. But they claim their pleas – backed by six