When most people hit 30, they celebrate in style, with a big night out or a trip away.
For many, it’s a day to remember and it was for Limavady woman, Laura Smith - but tragically for all the wrong reasons.
Laura was told the heartbreaking news her son, Callum, had Duchenne muscular dystrophy, an incurable muscle wasting disease.
“I just broke down when we were told. It’s heartbreaking.’”
A year on and Laura and her fiance, Paul McCorriston, and Callum’s big sister, Caitlin, are adapting to life in the knowledge the soon to be three-year-old has a hard life ahead of him. Their house is adapted especially for Callum and his future needs.
A typical tot, Callum is “full of life” and “a very happy”’ active child. He knows his numbers, his speech is well developed and he’s learning his colours. In the space of half an hour he packs in a lot - plays his keyboard guitar, scoots around on a mini-bike, plays with his toy kitchen, and empties an entire box of gadgets onto the floor. He also loves to dance, as he turns on the music and moves around the floor, laughing and smiling.
“That’s what’s so hard about it. He looks normal, but I know what is ahead of him.”
Laura had never heard of Duchenne until Callum was diagnosed. Since then she has devoured every piece of information she can about it. She has tracked other families in the North, whose children have Duchenne, and been in touch. She has attended meetings at Stormont about it.
“Already it is affecting Callum. He is unsteady on his feet and the slightest nudge from anything at all and he falls to the floor. He has difficulty getting in and out of bed and climbing on the sofa.
“When we see him with other children we notice it more. He can only walk so far and then he gets tired,” says Laura. “He’ll be in a wheelchair between the age of 8 and 11. Eventually he will be paralysed and he won’t be able to do anything for himself.
“It’s absolutely soul destroying.”
Laura admits she has times when she is down about it.
“People say to me ‘you’re so strong’, but I don’t see it that way. You can get depressed about it, and either sink or swim, but I wouldn’t be any good to Callum or Caitlin. You don’t have a choice.”
Since learning of Callum’s diagnosis, Laura and Paul have thrown themselves into fundraising for the charity Action Duchenne, including a street collection on a cold and wet day in Limavady last October. Paul is doing a fundraising glide in Magilligan soon.
Sister Caitlin (13), an Irish dancer, is performing in a two-night concert in Limavady to raise funds, along with almost 59 of her fellow dancers from the McGuinness School of Dancing.
To date, Callum hasn’t been able to take part in any clinical trials, but the family hope the money they’ve raised, and continue to raise, provides hope for the future.
“All we can do is raise awareness and raise funds and give Callum the best life possible and Paul and I want to thank everyone for all the little things they have done that mean the world to us,”she said.
“The concert is a fantastic idea and it will be a great night and Callum will be there.
“If he’s near the stage he’ll be dancing too and as long as Callum’s smiling we’ll smile.”
The concert takes place on May 2 and 3 at the Roe Valley Arts and Cultural Centre.
Tickets can be bought from the McGuinness School of Dancing at 07746538307 or from any member. To donate to Paul for his charity glide text Action glide to 70003. All proceeds will go to Action Duchenne. For information log onto www.actionduchenne.org/