Doctors say Haris, who suffers from Spinal Muscular Atrophy, say he may not make it till his first birthday without Spinraza, a drug no longer available in England but used in Scotland.
Today (March 6) his family and supporters protested at a meeting of the National Institute for Health and Care Excellence (NICE) and pleaded with them to make the drug available.
NICE have avoided recommending the drug because of its £400,000 a year cost. But the drug is available in Scotland.
Haris’ dad, Shakeel Khan, 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 Harris.”
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.
The manufacturers of the drug said today they will lower the cost of the medication and Haris’ supporters have set up a Just Giving page to fund their campaign. https://www.justgiving.com/crowdfunding/littleharis