OTLEY schoolboy Sam Brown is delighted to be back on his life-enhancing drug treatment.

The six-year-old, who suffers from the ultra-rare degenerative condition Morquio Syndrome, had been receiving Vimizim for three years before its manufacturer, BioMarin, reluctantly ended the trial in June.

The company, like Sam and other Morquio sufferers, had been waiting since last December for a decision from NHS England about whether it would fund the drug, only for it to be delayed once more.

Now BioMarin is reinstating the treatment for its 34 clinical trial patients until October 28, when the National Institute for Health and Care Excellence (NICE) will reach its conclusion.

Sam received his first infusion last Wednesday.

His parents, Katy and Simon, said: "It's a huge relief he is starting treatment again, albeit only as a temporary measure.

"The NICE decision continues to be crucial. We are praying for a positive outcome."

Katy also thanked everyone who had contributed to the MPS Society's crowdfunding campaign, which aimed to raise money to pay for the supply of Vimizim to Sam and the other patients until October 28.

She said: "It didn't raise enough for treatment, but the money (about £7,000) will be used to benefit the Morquio community as a whole."

An enzyme replacement drug, Vimizim has been shown in trials to improve stamina and energy levels and to allow children with Morqiuo to grow taller.

But NICE has flagged up doubts about the treatment's cost and benefits.