AN OTLEY boy with a rare genetic condition is enjoying secondary school - thanks to the ‘super drug’ he had to fight for.

Sam Brown has Morquio Syndrome, a metabolic disorder which stunts growth, saps energy and causes mobility and other problems.

The eleven year old is being helped by an expensive drug called Vimizim which has been shown to improve stamina and energy levels and improve the height of children with Morquio.

Sam’s family have described the drug’s impact as life changing but it was only made available through the NHS after they, and other families who had been receiving it as part of a clinical trial, fought a long campaign.

Those efforts paid off in December, 2015 when a five year agreement was announced: and Sam, who has just completed his first term at secondary school, has been reaping the benefits.

His mother, Katy, said: “Vimizim is even more essential to Sam now he’s started high school as it will allow him to really be the best he can be as school demands increase, and will allow him to grow his independence in this new chapter of his life.

“Without it, fatigue and problems with mobility would really start to impact his quality of life, his independence and his freedom.

“Morquio is tough and over time the challenges increase - Sam has to fight twice as hard as his friends just to get by. Vimizim is the ‘super charge’ that powers him on.”

Reflecting further on the difference the drug has made on the Keep Sam Smiling Facebook page, she said: “Our battle four years ago means Sam is able to get the bus home from school on his own - and walk home from the bus stop. He can, with a little help and forward planning, carry his own bag, turn the key in the door and lock the door.

“He’s got the energy to concentrate at school. And it shows in how he’s doing.

“At the weekend he walked with us for three miles. Slowly, and mixed with many piggy backs, but he did it. These might seem like trivial details but they really aren’t. They are vital steps on the road to independence.”

The Browns know they may have another anxious battle ahead but they are prepared for it. Katy said: “In 12 months’ time Vimizim is reassessed. Does it work? Is it value for money? Absolutely, 100 per cent. Bring it on.”