NHS England defers decision on Morquio drug by '12-16 weeks'
NHS England has today deferred a decision on Vimizim - the drug required by six-year-old Morquio syndrome patient Sam Brown from Otley - by a further 12-16 weeks.
Sam Brown takes petition to PM for treatment funding
Six-year-old Sam Brown suffers from Morquio Syndrome, a rare condition that means his skeleton does not grow properly, but his internal organs do.
He has been receiving a drug called Vimizin that helps him live a normal life it is expensive but it had been provided free by the drug company which produces it. However that deal is coming to an end.
Sam's family wants NHS England to pick up the bill, but it has suspended its decision making process.
Today Sam and his parents took their campaign to Downing Street.
Adam Fowler reports:
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