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Family must import drugs for sick child

A WORRIED family have been forced to privately import medication for their critically ill son as there are not sufficient facilities in Ireland.

Eight-year-old Sam McMahon suffers from a rare disorder of the nervous system called Friedreich's Ataxia, which was diagnosed in November 2008.

The Knocklyon schoolboy is affected by clumsiness, has difficulties with balance and lacks co-ordination.

And as he gets older, more medical complications associated with his illness will emerge.

But because the condition is so rare in Ireland, his family had to turn to expert medical advice in America.

"It's a condition for which there isn't a cure. It eventually damages the heart," said Sam's mother, Caroline.

"We've been to see this doctor in Philadelphia who eats, sleeps and drinks Friedreich's Ataxia. He recommended that Sam should go on a drug which provides a high dose of antioxidants.

"We're hopeful that it will ward off some of the damage which can be caused," she added. "Some research suggests that it can reduce the thickness of the walls of the heart."



Complications

The crippling condition is caused by an inadequate production of a particular protein, which leads to a degeneration of nerve tissue as well as associated complications such as heart disease and scoliosis.

Caroline said sufferers are usually confined to a wheelchair within 10 years of diagnosis.

And she said the medicine, which currently costs €100 for a bottle and amounts to thousands each year, has to be paid for privately as it is not covered by prescription.

"Because it is such a rare disease, we found that some people were saying there's 'no point', there is no centre of excellence here," Caroline said.

"There is no guarantee that the medicine will work but obviously we couldn't just sit by.

"This is all at our own expense, but it's the small thing that make a difference," Caroline explained.

"There is no form of actual treatment here."

The family are currently raising funds through a website www.sammcmahontrust.ie, and celebrity chef Neven Maguire has come on board to assist with their plight, with a sold-out cooking demonstration.

hnews@herald.ie


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