OTLEY boy Sam Brown has had his final dose of a life-changing drug - at least until a crunch decision is made next week.

The six year old and his parents, Katy and Simon, travelled to Manchester on Thursday, June 25 - as Sam has been doing each week for some three years - to receive his last dose of Vimizim courtesy of its manufacturer, Biomarin.

The family will finally find out next Tuesday, June 30, after a more than six months wait, if NHS England will now pay for the treatment.

But the Browns fear the worst, after the National Institute for Health and Care Excellence (NICE) announced it was recommending that funding be declined.

Katy said: "We are devastated that it has come to this.

"Sam is an innocent six year old boy who never chose to be born with a very rare disease, yet this treatment, which has transformed his life, is now being cruelly snatched away.

"We now face watching him deteriorate, knowing there is a drug out there, but that Sam can't have it.

"It is truly dreadful and I will never forgive those who have either perpetrated, or sat back and allowed this to happen."

MP Greg Mulholland (Lib Dem, Leeds North West), who has been campaigning for Sam and other children with similar ultra-rare conditions who need special drugs, told the House of Commons in June that ending his treatment would be "a death sentence".