When most people get a cold, they cough and sneeze and sniffle until it goes away.

Charlie-Anne Cox can't do that. The 14-month-old's muscles are too weak to cough and the mucus drains into her lungs.

"Just taking a breath, that's just running a marathon for her, it sounds like at times," says her dad, Matt Cox.

Charlie-Anne was diagnosed with spinal muscular atrophy type 1 just after Christmas 2009.

It's a rare genetic disorder that means weakness, poor muscle tone and trouble breathing, swallowing and talking. Muscular Dystrophy Canada considers the terminal illness the top genetic cause of infant deaths.

On Sept. 11, Matt's wife, Cherie, plans to run, mountain bike and kayak in the Adventure Challenge triathlon in Deep Cove and tell people about spinal muscular atrophy.

She and three friends, called Charlie's Angels, have already raised more than $8,500 to benefit Canuck Place Children's Hospice, which, the couple says, has provided them fantastic support.

"We had no idea we were carrying the gene," Cherie said. "It could happen to anybody. Because it happened to us.

"Prepare yourself to know."

Though her brain remains as sharp as any tot her age, Charlie-Anne's head has to be held when she's sitting up. She can move her arms a little, but her legs flop around. She can't play much with other kids because she might catch germs.

"I'm looking at all these children who are completely normal," Cherie said, "and they're scary, sick aliens and I have to keep them away from my child."

Bottles of hand sanitizer sit on the table in their Yaletown apartment, and special machines to help Charlie-Anne breathe and swallow wait in the corner of the living room.

"It's like watching your child suffocate while you stand back," Cherie said. "They're sort of trapped in their own bodies."

But they hold, cuddle and sing to her, and take her out for walks every day.

"She loves going outside. She loves seeing new things," Matt said. "Her whole experience through life is through her eyes."

Though it can often be uncomfortable to answers questions of curious strangers, the Coxes say it's a chance for them to explain the disease and what it does.

"I love that she's teaching everybody something," Cherie said.

Over time, it'll be harder and harder for Charlie-Anne to move, eat and breathe as her body outgrows her muscles.

She was given only a few more months to live when she was diagnosed with spinal muscular atrophy at six months old. But Charlie-Anne celebrated her first birthday in June.

Though the Coxes have good days and bad days, they still live each day with their smiling daughter as if it were her last.

"I've got the happiest kid in the world, who's always smiling and always wants to absorb and learn," Matt said.

Contact: lbaziuk@theprovince.com, twitter.com/laurabaziuk

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