THE PARENTS of Otley boy Sam Brown have hailed the "really positive" news that health bosses might finally be prepared to fund their son's treatment.

The National Institute for Health and Care Excellence (NICE) has announced it is leaning towards approving Vimizim, a drug that Morquio Syndrome sufferers like Sam have described as life-changing.

The news, which came in the form of draft guidance last week, represents a surprising turnaround by the health regulator - which earlier this year had said it was minded to recommend against funding the treatment.

For six year old Sam and his family it also marks a final cause for hope in their long battle to get NHS England to agree to fund the drug, which was approved at Europe-wide level back in April, 2014.

Less welcome, however, was the news that NICE will no longer be ready to make its final ruling on October 28.

Sam's parents, Simon and Katy, said: "It is really positive news and the most positive situation we have been in.

"But it is still not a decision and there is a long way to go.

"We are disappointed that the timescale for a final decision has now been pushed beyond October - this means sufferers who were not part of the clinical trial have to wait even longer for the drug, and, for us, the agonising limbo is extended.

"We urge NHS England and NICE to consider the serious emotional and physical impact that over 12 months of delay is having on patients and families, and commit to draw this matter to a conclusion quickly."

MP Greg Mulholland (Lib Dem, Leeds North West), who has been leading the #FundOurDrugsNOW campaign, is also cautiously optimistic.

He said: "I welcome the announcement that NICE are leaning towards recommending approval of Vimizim.

"Sam Brown and the 87 others across England with Morquio Syndrome are now a step closer to securing supply of the drug.

"It is certainly not ideal that the decision date has been delayed, and I call on NICE to confirm the new date urgently.

"The campaign will continue until the date is confirmed, the drug is approved, and funding is released."

Chief Executive of the MPS Society, Christine Lavery, added: "We are relieved by the announcement.

"However, we call on Prime Minister David Cameron to now show compassion to the children diagnosed too late to participate in the clinical trial, who are deteriorating whilst they wait for the final positive decision.

"Individuals with Morquio and their families have been emotionally drained by the catalogue of errors that has led to the dragging out of the decision-making process by NHS England, and the changing of goals."

Morquio Syndrome is a degenerative genetic condition that severely affects mobility and growth.