A father whose son has spinal muscular atrophy has told ITV News of his "disgust" at the NHS' refusal to pay for the "miracle" drug Spinraza.
Families have said NICE have avoided recommending the drug because of its high cost of around £400,000 a year.
Among those affected is six-month-old Haris and doctors have told his parents he will not live to see his first birthday.
But his father, Shakeel Khan, has argued that those who have been given the drug in Scotland, where it is available on the NHS, have seen their quality of life improve.
He told ITV News: "There is a treatment out there called Spinraza that can help save his life.
"But it's not available on the NHS here in England, we are absolutely disgusted at this.
"Apparently it's too expensive to treat Haris."
Zac, a four-year-old in Scotland has the same condition and has been given the medication.
His mother, Amy Cameron, has described Spiranza as a "miracle" drug.
His mother told ITV News: "We were told Zac wouldn't see a second birthday. He is going to be four in June.
"We were told he probably wouldn't be able to write or use a pen and he's come home from nursery and my fridge is full or painting and drawings and it's just a miracle. "
While the drug is not seen as a cure families in England are pleading for it be made available on the NHS.
Spinal muscular atrophy is a genetic condition that weakens the muscles and gets worse with time.
Haris' father told ITV News: "My son is no different to Zac, he deserves the same treatment Zac is getting.
He deserves to reach the same milestones. And he can reach those milestones, if he gets Spinraza.