OTLEY’S MP has tabled a Parliamentary motion warning that delays are putting people with rare diseases at “risk of significant harm”.

Greg Mulholland’s (Lib Dem, Leeds North West) move is designed to keep the pressure up on NHS England over its funding of treatments for ultra-rare conditions.

Drugs like Vimizim have proven to be life-changing for people like six-year-old Otley schoolboy, Sam Brown, who has been on a clinical trial for the past two years.

The Whartons Primary School pupil has Morquio syndrome, a life-limiting genetic condition that severely restricts growth.

But Sam, like others rare diseases, has been anxiously waiting for two months now to see if NHS England will fund his treatment.

A ruling was originally meant to take place in December but was scrapped to allow a review of the whole decision-making process to take place.

Mr Mulholland’s motion “calls on the Government to bring into force, without delay, interim measures to provide children and adults with rare diseases access to vital and proven medicines that will prevent organ deterioration and premature death.”

He said: “I am continuing to push NHS England to honour their clear moral, as well as legal, responsibility and to announce interim funding so all these children can access the drugs they need.

“The delay caused by NHS England is simply not acceptable. I am continuing to work closely with Sam’s parents, Katy and Simon, the MPS Society, the Muscular Dystrophy campaign, Joining Jack and now also the Tuberous Sclerosis Association and other organisations and MPs. We are talking about 180 children and 180 families who are currently being ignored.”