Small victory in campaign to save Limavady boy

Callum’s mum, Laura Smith, has been campaigning for some time to get access to a drug known as Translarna, which could slow down the progression of the rare muscle-wasting condition that Callum suffers from.

The little Limavady boy suffers from a condition known as Duchenne, a rare and acute form of muscular dystrophy that is causing a steady deterioration in his muscles and will eventually cause him to be wheelchair-bound. There is no cure for the condition and most sufferers in Northern Ireland die from the condition very young.

The new drug works only for those whose condition is caused by a particular genetic mutation and Callum is the only child in Northern Ireland who the drug could help who does not already have access to it.

Laura recently lodged a request with the Health and Social Care Board for the drug to be made available. The request was initially turned down but a sliver of hope is still there for little Callum.

Laura explains: “We’ve been informed that due to Callums story getting so much exposure, the Health and Social Care Board have amended their decision from ‘refused’ to ‘needs more info.’

“We have to prove ‘exceptional circumstances’ in Callums case. That’s going to be hard. Callum’s progression must be ‘worse than 95 per cent of other children at the same age with Duchenne.’

“His heart medication cannot be taken into account as they can’t prove that’s Duchenne related.

“I feel the 95 per cent rule should not apply in this case as Duchenne in itself is a rare disease.

“Translarna will only work for approx 13 per cent of boys with the condition and Callum is still the only boy in Northern Ireland not receiving it.”

You can find out more information about the Team Callum campaign via the dedicated Facebook page. 

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