A YOUNGSTER with a rare genetic disorder is able to live a full life thanks to life changing treatment.

Seven-year-old Ben Conlin suffers from Hurler Scheie disease, a strain of mucopolysaccharide (MPS) affecting only 100 children and adults in the country.

Ben was diagnosed with the disorder when he was two.

Sensing something was wrong, his parents asked for a second opinion after a doctor said he was just overweight and suggested he switched to skimmed milk.

Following his diagnosis, his parents, Peter and Tracey, took him to Manchester for treatment every week for a year until they were given the news that the medication would be available at the University of North Tees Hospital, in Stockton.

Mucopolysaccharides are chains of sugar molecules used in building connective tissues.

Children with MPS1 are missing an enzyme which means the cells are stored in the body, instead of being used.

The disease means Ben is less flexible and not as strong as other children his age, as a result of the build up of sugars in his joints. Without his weekly treatment, he would be sick and constantly tired.

Mr Conlin, of Oulston Road, Stockton, said: “Just before Christmas, we were given the news that he could be treated at home and in school, which was fantastic. It makes such a difference and means he does not miss school and can get on with his life.

“His teachers at his school have been fantastic – we couldn’t ask for better.”

Ben, who attends St Patrick’s RC Primary School, in Thornaby, near Stockton, refuses to let the disease get in the way, despite having had five operations on his head.

A Chelsea fan, he has been a mascot for his favourite team and, like many children, prefers playing on his Playstation 2 than doing his homework.

Mr Conlin said: “He can do most things and is very bright. He is very healthy and loves to play football. He is also very confident and leads a pretty much normal life.”

He added: “When we found out there was a problem we were devastated. I can only describe it as finding that your best ever Christmas present is broken.

“But we love him so much and we just take each day as it comes, we don’t know what will happen in the future.”

“At the moment there isn’t a cure, but ten years ago his treatment didn’t exist, so we live in hope.”