AN Otley boy with a rare genetic condition is to take his fight for NHS treatment to Downing Street nex week.

Six year old Sam Brown is one of just 88 people in the UK with the life-limiting Morquio Syndrome, which affects growth and movement.

For the past two years he has been receiving Vimizim, which can slow the disease, as part of a clinical trial by drugs company BioMarin - and experiencing real benefits as a result.

But his parents, Katy and Simon, are now facing an anxious wait to see if NHS England will pay for the treatment - currently still being provided only thanks to the goodwil of BioMarin - to continue.

The family's MP, Greg Mulholland (Lib Dem, Leeds North West), secured a Parliamentary debate on the issue this week - and called for urgent action to end an 'unacceptable limbo'.

He said: "I was very pleased to secure this debate and raise the situation that these children with Morquio Syndrome and Duchenne Muscalar Dystrophy are in since NHS England scrapped their flawed process for approving the only drugs that work.

"NHS England urgently need to put in place an interim process for funding the drugs Vimizim, for children with Morquio Syndrome, and Translarna, for those with Duchenne Muscular Dystrophy.

"Along with all the families involved and the organisations that support them, I am continuing to call for this to be done by the end of January.

"Next week Katy, Sam and I are going to 10 Downing Street to hand a letter in and I am hoping to meet health minister George Freeman MP again.

"This is very much an issue I will continue to push due to the urgency and the fact that, without access to these drugs, these children’s conditions will deteriorate which will hugely affect their and their families' quality of life."

Other MPs with constituents in a similar predicament, along with famlies and representatives from supporting charities, also attended the Westminster Hall debate on Tuesday, January 20.

Families like Sam's had originally been expecting a decision on December 15, 2014. A legal challenge, however, caused NHS England to abandon its existing system and review its decision making process for financing treatments for ultra-rare diseases.

The MPS Society's chief executive, Christine Lavery, said: "Whilst we welcomed the debate the situation still stands that children are being denied access due to NHS England’s failed processes. The emotional angst this uncertainty is causing with our families is unacceptable."

*Sam's school, The Whartons, will be throwing its weight behind his cause today [THUR JAN 22] when pupils will be designing banners for his London visit and writing letters to the Prime Minister.

A representative from the MPS Society will also give a talk about Morquio Syndrome and why Sam's treatment is so important.