AN MP has told Parliament that ending an Otley boy's drugs treatment would be like delivering "a death sentence".

Greg Mulholland (Lib Dem, Leeds North West) made the comment this week as he once again raised the case of six year old Sam Brown.

The Whartons Primary School pupil has been receiving Vimizim to treat his rare genetic condition, Morquio Syndrome, for several years.

But Sam and his parents, Katy and Simon, have been waiting for more than six months now to hear if NHS England will pay for the treatment.

An interim decision was due to be taken next week, but the National Institute for Health and Care Excellence (NICE) is recommending that funding be declined.

Mr Mulholland, addressing Life Sciences Minister George Freeman, said "We are here today because after three and a half years, in just days, Sam’s access to Vimizim looks all but set to be cut off."

He went on to raise the plight of the 180 people across the UK who are affected by Morquio Syndrome, Duchenne Muscular Dystrophy and Tuberous Sclerosis Complex.

And he pointed out that Vimizim, which had made Sam "physically more capable, stronger and with more stamina than he has ever had", was now available in 20 European countries but not the UK.

Turning to the interim guidance that has been published by NICE, he insisted it had been wrongly based on the full £395,000 per person, per year cost of Vimizim - when its producers had offered NHS England a lower price.

He concluded by quoting Katy Brown, who has said that cutting off her son's supply would be equivalent to "being handed a death sentence. He is being denied his freedom, his independence and his future."

Mr Freeman said he had raised the issue of ultra-rare treatment funding with the Chancellor, and that, separately, a decision on Vimizim would now be announced on June 30.

Speaking afterwards, Mr Mulholland said: "Many MPs took the time to attend and shared experiences of families who had also been let down by NHS England and its bureaucracy.

"Hearing their stories showed why we need a complete overhaul of the system.

"Other European countries are getting ahead while we lag behind because of bureaucracy, and I will continue to fight for Sam Brown and the drugs he needs."