Limavady Mum Laura Smith has expressed delight after being awarded the Muscular Dystrophy UK President’s Award of Charity Champion.
Laura’s son, Callum, suffers from a condition known as Duchenne - a rare and incurable form of muscular dystrophy that causes severe muscular deterioration. Callum, who is six-years-old, can’t walk very far at this early stage of his struggle with Duchenne. His condition will deteriorate until he eventually becomes paralysed. The average life expectancy for Duchenne sufferers in Northern Ireland is just 19.
Callum’s Mum, Laura, has been campaigning to raise awareness of the condition and to fund research efforts into finding a cure. She has also fought tirelessly to secure access to the only drug that can slow down the progress of Duchenne. The drug is known as Translarna and, to date, it has not been made available for Callum although Laura remains hopeful that a recent decision not to make it available can be overturned.
Her efforts have galvanised the community in Limavady and farther afield under the #TeamCallum campaign. Her outstanding work has now gained the recognition of the UK-wide muscular dystrophy charity and its President, Sue Barker.
Speaking to the Sentinel, she said: “I didn’t even know I was nominated for it! I am really pleased to have won it. I only found out about it this morning. I can’t believe it.
“They say it is for the work I’ve been doing but really that has worked out so well so far because everybody has been really brilliant getting behind it. People have been so good.”
She added: “I’m totally, totally overwhelmed. Honestly, I can’t believe it. We started TeamCallum to raise awareness of Duchenne as it is so unheard of. All our fundraisers have been so successful because of people donating and helping out. I’m so honoured to receive this.”
Laura has also decided to accept an invitation from the charity to offer ‘peer support’ to other young parents in similar circumstances.
She said: “I would have loved somebody there like that whenever it was us. Just simple things like telling you who you need to speak to, who you need to ring, how to get in touch with a consultant - things like that.
“It is just nice to have somebody there to ask. I think you would need at least four people like that in Northern Ireland just to get around all the areas.
“There is another person from a group called Leap for Luke who is from the Coalisland direction and she is going to be doing it too. When your child is diagnosed with Duchenne you are just sort of left there to get on with it. It is not easy and I know how much it would have helped to have somebody like that there when it was us, so I just decided to do it when they asked me.”
The Muscular Dystrophy UK awards are presented at their National Conference on September 26 by Sue Barker.
You can find out more about the TeamCallum campaign here.
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