THE DEPUTY Prime Minister has vowed to ‘look urgently’ at the treatment funding crisis facing an Otley boy.

Sam Brown, who has the rare genetic condition Morquio disease, will see his supply of Vimizim end on May 12 - with NHS England yet to say whether or not it will then pay for it.

The six-year-old has been benefitting from the drug in a clinical trial for two years but is still waiting, like other children with ultra-rare conditions, on a decision from the Government.

Sam’s MP MP Greg Mulholland (Lib Dem, Leeds North West) led another protest over the issue with campaigners and families outside the Department of Health this week.

Mr Mulholland had earlier raised The Whartons Primary School pupil’s case with Deputy Prime Minister Nick Clegg.

He said: “I welcome the Deputy Prime Minister’s commitment to urgently look at the situation, but this has now been going on for far too long.

“Sam is one of 180 children around the country being let down by NHS England.

“It was NHS England whose process for commissioning drugs had to be scrapped so the moral and potentially legal responsibility is on them to sort this out and put interim funding in place for the drugs these children need.

“Yet they are hiding behind bureaucracy and not giving answers to the children and their families.

“The Prime Minister said that there should be continuity of treatment, yet we have found out that that will not be delivered by the Department of Health.

“Sam’s mother, Katy, has said that that is at best ‘misleading, at worst underhand’.”

The MP had already raised the matter three times in the last four months with David Cameron at Prime Minister’s Questions.

Responding to his statement on Tuesday, Mr Clegg said he would “look urgently at the matter”.

Katy Brown, meanwhile, said it was time to act.

She said: “NHS England have significantly failed in their duties.

“Two years on and there is still no process in place for ultra rare diseases. The Department of Health has a duty of care to step in now to prevent more lives being lost and destroyed.

“Their refusal to do so under the guise of the need for proper process is laughably ironic, given a complete lack of proper process is the reason we are in this sorry mess.

“It is time to stop hiding behind vague words and face the truth. Sam deserves far better than this as does every single sufferer.”

Campaigners and Mr Mulholland were due to meet Life Sciences Minister George Freeman today to lobby further for interim funding.