AN OTLEY family is preparing to fight all over again to secure vital treatment for their son.

Eight year old Sam Brown, his parents Katy and Simon, and brother Alex were all celebrating just 16 months ago after a long campaign ended in victory.

Sam, who has the ultra-rare condition Morquio Syndrome, relies on Vimizim and was finally assured in December, 2015 that the drug would be provided through the NHS.

New proposals by NHS England and the National Institute for Health and Care Excellence (NICE), however, look set to jeopardise his future treatment.

They wish to introduce a £20 million cap on drugs in their first three years of funding - something Sam's mum and the family's MP have slammed as 'completely arbitrary'.

Posting on the Keep Sam Smiling Facebook page, Katy said: "Sam's treatment is safe in the short term - this does not affect him right now, but it almost certainly will in the future if we don't stop the changes that NICE and NHS England have just announced.

"They have in effect denied anyone living in England with an ultra rare condition access to any new treatment that might be in development by imposing an arbitrary cap on cost that would preclude any drug for these conditions from being approved.

"This puts us right back to where we started in 2014, a small, vulnerable sector of the population excluded from treatment because they happen to suffer from a very rare disease.

"Forget the politics, forget the economics, this cannot be the answer in a civilised society."

Katy, who likens the new predicament to "a cruel and depressing version of Groundhog Day", has written to NHS England and NICE urging them to reconsider.

MP Greg Mulholland (Lib Dem, Leeds North West) has also tabled a Parliamentary motion expressing 'deep concerns'.

Mr Mulholland, who led the #FundOurDrugsNOW campaign, said: "The cap shows that the Government just do not understand the situation seriously ill people are facing.

"The figure of £20 million is completely arbitrary, it takes no account of the effectiveness of the drug or progress that being made towards increased affordability.

"That this cap may prevent new drugs being developed goes against the idea of always working to better the situation for those who are sick.

"Even more galling is the idea that a drug currently being used by a sick individual may be withdrawn if it falls foul of this cap.

"That could be devastating for individuals like Sam who currently receives Vimizim."

He added: "I have written to the Health Secretary demanding he identify exactly which currently available drugs will be affected.

"The Government have to be absolutely clear and then we can identify how many people stand to have the drugs they rely on taken away .

"We have to make sure every decision is open to scrutiny and can be questioned, with a genuine chance of being overturned."

Katy is asking people to sign an online petition calling for a 'pause' to the proposals - a link can be found on the Keep Sam Smiling Facebook page.