A "DEVASTATED" Otley family are vowing to fight on to get treatment funding for their six year old son.

Simon and Katy Brown have been waiting since last December to find out if NHS England will pay so their son, Sam, can continue receiving Vimizim.

The Whartons Primary School pupil, who has Morquio syndrome which severely affects growth, has been benefitting from the drug through a clinical trial for two years.

But now the National Institute for Health and Clinical Excellence (NICE) has published preliminary findings which show it is 'minded' to recommend against funding the treatment,

NICE says the estimated annual cost of providing the drug is £395,000 per person.

And while its report acknowledges Vimizim is "likely to provide valuable clinical benefits", it also notes that it does not "entirely stop disease progression".

Mr and Mrs Brown said: "We are devastated but we are absolutely determined that we will get the right answer for Sam.

"We still have twenty days before an NHS England decision - the Clinical Priorities Advisory Group is due to make a ruling on June 25 - and the fight is on for what is right.

"The backdrop to this is so complex but it comes back to an innocent, six year old boy.

"Sam never chose to be born with Morquio. He's had to endure more in six years than most of us do in a lifetime.

"He has been given the chance of a better, longer life and he deserves the same access to treatment as anyone else.

"His life is no less important than anyone else's because the disease he suffers from is rare."

MP Greg Mulholland (Lib Dem, Leeds North West) agreed NICE's statement was a major blow, but has also vowed to fight on.

Mr Mulholland, who has been calling for help for Sam and others like him for six months, raised the issue again in Parliament last week.

He said: "The reality is NHS England has failed to respond to letters or turn up for meetings, and has behaved in an utterly unaccountable manner.

"Will Ministers finally get a grip on this and give the families affected by these various conditions some sense of when they might get the treatment that could improve their quality of life?"

Speaking afterwards, he added: "NHS England have consistently mishandled this important matter and are arrogantly refusing to properly respond to complaints.

"One hundred and eighty people and their families, including Sam and his parents, are being let down by faceless bureaucrats who are not being held to account."

*For more details about the family's campaign visit their Keep Sam Smiling Facebook page.