Coping with son’s tragic illness

CALLUM is two years old and has been diagnosed with a rare illness, causing his muscles to waste away and slowly paralysing his body as he grows up.

His mother Laura Smith and the rest of his family have been spending all their spare time trying to raise money for a charity providing them with help and support, as well as working towards a cure.

When the Limavady boy was diagnosed with Duchenne Muscular Dystrophy, his young mother had never heard of the illness, let alone how to deal with it.

Mum Laura has since been in contact with ‘Action Duchenne’, who bring parents whose children have been diagnosed with Duchenne together in order to provide one another with help and support. The charity also spend much of their donated money on funding scientific research into the illness, in the hope that one day a cure might be developed for the untreatable disorder.

Laura Smith spoke to the Sentinel to talk about the fund-raising work she and the rest of her young family have been carrying out in an attempt to help the charity.

She also spoke about how the family have been coping with the knowledge that their happy, well adjusted and quite normal toddler will one day be paralysed from head to toe before his life is cut short – as well as the difference in the standard of care available between Northern Ireland and the rest of the UK.

She said: “Duchenne Muscular Dystrophy is a progressive disease – he is going to get worse and there is no cure. He has a shortened life expectancy. Basically the prognosis is – by his late teens he will be in a wheelchair and eventually he will be completely paralysed by it. It will affect his limbs first, then his body, then his heart and then...

“The biggest question I have is why? Why him? The medical questions they can answer, but why does it have to be Callum?”

Callum’s older sister Caitlin attends the McGuiness School of Irish dancing in Limavady, and will be taking part in a special dance show to raise money for Action Duchenne, while his father is doing a sponsored para-glide for the charitable organisation.

Laura, who has also been hard at work promoting the charity during street collections, said that while it was difficult to accept the prospect faced by her son of being restricted to a wheelchair, before being completely paralysed in his teens, the whole family were remaining strong.

Speaking about the fund-raising work, she said: “I think an important thing is raising awareness about the disease and about the work the charity are doing. I mean, I hadn’t heard of Duchenne Muscular Dystrophy until Callum was diagnosed. The more people know about the charity and the disease then maybe more people will sponsor my fiancée for the para-glide and maybe more people will come along to the Irish dancing.”

To sponsor Callum’s father Paul McCorriston for his charity para-glide, text Action Glide to 70003. 100 per cent of the money will be donated to Action Duchenne.

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