AN OTLEY family fighting to secure funding for their son’s vital health treatment have been thrown a lifeline.

Six-year-old Sam Brown is one of only 88 people in the UK to have the life-limiting genetic condition Morquio Syndrome.

For the past two and a half years he has benefitted from a clinical trial of Vimizim, a drug that can slow or stop the disease.

But Sam’s parents Simon and Katy, and families of other children in a similar position, are now enduring an anxious wait to see if NHS England will agree to fund the medicine.

This week the Browns, other parents, and charity representatives met Health Minister George Freeman to express their concerns and seem to have gained an immediate result.

MP Greg Mulholland (Lib Dem, Leeds North West), who arranged and attended the meeting, said: “Following my raising this issue in the Commons, it was crucial to meet the responsible health minister to make the urgent case for securing the drugs needed by children with the ultra rare conditions Morquio Syndrome and Duchenne Muscular Dystrophy.

“The three families who came, representing 140 children nationally, gave eloquent and moving testimonies about how crucial it is for their children to be able to access drugs which are clearly crucial to their quality of life. I am very pleased the minister is now setting up a meeting with the drugs companies before Christmas, and I hope this will lead to an interim solution to allow all these children to access the drugs quickly.

“Their conditions mean they simply cannot wait till NHS England establishes a proper process.

“We need to give children like Sam the Christmas present they want and need, which is access to these life-changing medicines. I will continue to do everything I can as Sam, Simon and Katy’s MP, to keep him smiling.”

Sam’s mother, Katy, added: “We are hugely impressed by the support Greg is giving to this critically important issue, which may be the difference between life and death for the 140 sufferers of Morquio and Duchenne Muscular Dystrophy in England.

“Sam has not chosen to suffer from an ultra-rare disease, he isn’t old enough to make lifestyle choices that might affect his health, yet he is being denied treatment by the NHS.

“Mistakes have been made and it isn’t right that a six-year-old should have to shoulder all of the consequences. Sam deserves this fight, he deserves the right result and we shall carry on until we get it.”

The MPS Society, which supports the families of children living with Morquio Syndrome, were also encouraged.

Communications officer Charlotte Roberts said: “Yesterday’s meeting was a great first step to the reimbursement decision of Vimizim and Translarna, and we are grateful to Greg Mulholland for supporting us and making this a national issue.

“Out of a £15 billion budget for NHS England Specialised Commissioning, it will only take £30 million to treat Sam and all these other children...who should not be penalised for NHS England’s inability to develop a process for deciding reimbursement.”