Debra Chiabai first noticed that something was wrong when her son, Alex, was about a year and a half old.
“He was delayed in a lot of his milestones, like sitting up, rolling over, standing and walking. He had some speech delays as well,” she said.
A year later, Alex was diagnosed with a type of muscular dystrophy.
“It’s a very difficult thing to cope with,” said Chiabai, who got involved with the Ottawa chapter of Muscular Dystrophy Canada soon afterward. “Things are still possible, but you need to do it differently.”
Alex, now 10, is doing well, she said. “He’s not as strong as other kids, so he has trouble running and participating in some activities.”
Hundreds of people raised $45,086 for the annual Walk for Muscular Dystrophy yesterday. But equally importantly, the event serves to teach people about muscular dystrophy, Chiabai said.
“It lets (Alex) see that people can actually live with muscular dystrophy,” she said. “You can be out and be a part of the community.”
There are more than 50,000 Canadians living with a neuromuscular disorder.
“Often, people are affected by a significant impact on their mobility or a loss of mobility,”?Chiabai said, adding the disease can also affect the lungs and heart.
The funds raised provide ongoing support and resources, as well as funding research.
“Ottawa is a centre of excellence for neuromuscular research,” said Dr. Rashmi Kothary, an associate director with the Ottawa Health Research Institute and a professor at the University of Ottawa.