Belfast Telegraph

Wonder drug helps little Callum ride bike for first time

Mother tells of her delight as little Callum (6) defies all expectations

By Donna Deeney

A six-year-old Limavady boy diagnosed with a fatal form of muscular dystrophy is riding a bike for the first time - just two months after he was prescribed a revolutionary new drug.

Callum McCorriston is one of only a handful of boys in Northern Ireland diagnosed with Duchenne muscular dystrophy, which sees sufferers rarely living beyond their teenage years.

Callum's mother, Laura, has campaigned for two years to get the drug Translarna for him.

Callum got his first prescription last August, when the medication became available on the NHS. Within a matter of weeks, the positive effects of the drug were clear to see.

Mum Laura Smith said the change in her son was better than she had dared to hope for. "The most incredible thing for us is that Callum can pedal a bike, which I know for most parents is something that is taken for granted," she explained.

"Because of the Duchenne, Callum's legs are very weak, so a lot of things are very difficult for him and some have just not been possible.

"The first thing we noticed after Callum started the Translarna was that he needed less and less support when he was getting up and down kerbs.

"The biggest transformation, however, has been his ability to pedal a bike, which used to be an impossible task for him.

"Callum was attending a routine physiotherapy assessment that gauges the progress of the Duchenne's. In the middle of the appointment, Callum asked to go on a bicycle that was in the room and I tried to deter him because he hadn't the strength in his legs to move the pedal.

"But behind my back, Callum got on the bike and rode it around the room.

"I was completely astounded and I just couldn't believe my eyes. Obviously, the next thing that we did was go out and buy Callum his first bike, which he loves."

Muscular dystrophy is an inherited genetic condition that causes the muscles to weaken.

It gets worse over time, leading to an increasing level of disability. Duchenne is one of the most severe forms of muscular dystrophy.

Translarna is not suitable for all children with Duchenne, but Laura hopes it will open the gateway for other drugs that will help children.

"There was always the chance that Callum's body would reject Translarna, but thankfully that didn't happen," she said.

"We had hoped that it would at least hold back the inevitable deterioration for as long as possible, and we didn't dare to dream that it could mean improvement in Callum, but this is like a dream come true for us.

"We know how lucky we are and I feel so sorry for the other children who are not suitable for Translarna, but hopefully this will open the way for other treatments that will suit more children, and that's something I will continue to campaign for."

Belfast Telegraph

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