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Fund for children who need casts and splints takes off

Evan McNamara, now 11, has been in casts or splints since the day he was born. - Photo submitted
Evan McNamara, now 11, has been in casts or splints since the day he was born.
— image credit: Photo submitted

The Casting and Splinting Program at Surrey's Centre for Child Development received $90,000 in donations last month, thanks to a remarkable man whose name continues to make a difference.

When Ken McBain retired as chairman of the Centre’s Foundation Board in November 2012, he had no idea his name would become part of a legacy that would continue his charitable work to help fund the Centre’s Casting and Splinting program.

An annual fundraising gala on Nov. 17 included an announcement about the Ken McBain Legacy Fund to commemorate his outstanding volunteer work at the centre since 1997.

“It was quite a surprise and honour to have the legacy fund set up in my name,” said McBain.

The decision to have the fund benefit the Casting and Splinting Program, which addresses orthopedic issues and helps kids’ bones and muscles develop properly, was a fitting choice.

Ken McBainMcBain (left) can relate to the small clients who walk through its doors. He suffers from Charcot-Marie-Tooth-disease – an inherited neurological disorder that affects the muscles – and wears braces on both of his legs.

“I know the importance of mobility,” said McBain.

Equipment to help people with such disorders is not government funded, and resources are often tight for parents who must cover the cost of casts and splints as well. A pair of specially made shoes ranges from $2,500 to $3,000, according to Michelle McNamara, whose son, Evan, 11, has been in casts or splints since the day he was born.

Evan has a condition called Arthrogryposis, in which his muscles and tendons don’t grow fast enough to keep up with his body. He wears splints on his arms and legs, and because he’s growing he needs them replaced regularly.

McNamara has kept every one of her son’s orthotics, about 30 of them. They are expensive, but a necessary part of his treatment.

“Evan would be in a wheelchair without them,” said McNamara. But today he walks, he runs, he jumps, “he does everything,” she said.

Like many his age, Evan likes to play basketball and video games, and for the last three years he’s been taking therapeutic horseback riding lessons and now rides unassisted.

Parents of children like Evan who don't have extended health benefits are the hardest hit, said McBain.

“I have two braces, one on each leg, and right now they are $3,800 each to buy,” he said. “That’s a pretty outstanding amount… for families to come up with,” he said, adding that even with extended health benefits “you’re lucky to get maybe 60 per cent (coverage).”

It's quite a shock for parents to learn their child’s treatment isn’t funded, said McNamara.

“That’s when you find out about Variety (the Children’s Charity), and sponsors, and people that donate money."

The Centre for Child Development's Casting and Splinting Program receives partial funding from the Charles Johnson Charitable Foundation, but the needs exceed current resources. Without further fundraising, the program wouldn’t be able to continue.

That's where the Ken McBain Legacy Fund comes in – and Evan McNamara is its biggest booster.

Since Evan was just four years old he has been the centre’s ambassador. His confidence and willingness to speak about his condition made him a natural choice.

“He doesn’t mind talking about his disability even from a young age. He always saw or has seen people looking at him strangely. He’s always been very open with it,” said McNamara. “He does a lot of talking to people… thanking people for their donations and things,” she said.

Donations to the Ken McBain Legacy Fund help the Casting and Splinting Program provide the best care possible for children with developmental disabilities. To make a donation, contact Karla Pearson at 604-591-5903, or donate online at www.cdfbc.ca/donate.htm

 

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