OTLEY parents are desperately seeking help to secure funding for a wonder drug that is prolonging their son’s life.

Whartons Primary School pupil Sam Brown, six, suffers from an extremely rare, inherited genetic disease called Morquio Syndrome.

The condition, which only affects one in every 250,000 people in the UK, causes progressive physical disability and shortness of stature, and is significantly life limiting.

For the past two and a half years Sam, whose two-year-old brother Alex is unaffected by the disorder, has spent a day a week at Manchester to receive a clinical trial of Vimizim.

His parents, Katy and Simon, say the treatment – which can slow or halt the disease’s progression – has made a massive difference.

But the drug is not yet funded by the NHS, whose Clinical Priorities Advisory Group will decide in mid-December whether or not to back it – and the signs are not looking good.

Katy said: “The clinical trial has benefited Sam hugely.

“But every indication we have been given thus far is that the funding will not be approved by NHS England, which means his treatment would stop and the disease would be allowed to progress.

“This is unthinkable.

“In addition, it has emerged that the scorecard system used by NHS England to appraise drugs for funding actively discriminates against very rare diseases.

“There are only 88 people in the UK suffering from Morquio Syndrome and, as it stands, this means it will be impossible for them to access any kind of treatment.”

She is urging everyone to get behind an online petition, which sports a photograph of Sam, that has been started by the MPS Society to demand that the NHS provides treatment for people with very rare conditions.

She said: “Sam has a very limited time frame for the right decision to be made – four weeks.

“He has no idea of the silent path Morquio Syndrome has set for his future. With Vimizim, he may never need to know.

“When Sam grows up, he wants to be a fireman, or a scientist. Being in a wheelchair does not feature in his future plans.

“He did not choose to be born with a very rare disease. Please help him and other children not have to suffer the consequences.”

Otley’s MP Greg Mulholland (Lib Dem, Leeds North West) is also working with the family and other MPs to lobby for the funding to be approved.

The petition, which can be viewed at mpssociety.org.uk, has attracted more than 6,000 signatures in just one week.