Bloom magazine: Helping Kids With Disabilities Grow
rolemodel

 

‘We’re so close, it feels like we’re twins.’

 

 

 

 

 

 

 

Joey

 

Have joystick, will travel
two brothers, one with breathing tube, smile
In some ways, Joey Shek is a typical five-year-old boy. He loves cars, playing tag and going to school.

But in other ways, he’s one-of-a-kind. His favourite food? An apple. A funny tale? “The time I went to a farm and the cow started eating my tubes,” he says, giggling and shaking his head. “I had to call the nurse for help.”

Joey’s tubes – which keep him attached to a portable ventilator – are as much a part of him as his big brown eyes and exuberant personality.

Joey has a rare form of muscular dystrophy that weakens his muscles. But despite his complex medical picture, he’s a regular kid who zooms through the halls at Bloorview in a miniwheelchair he drives with a joystick. “I like going fast,” he says, a helium balloon trailing in the air behind him.

For the last two years, Joey has lived on Bloorview’s complex, continuing-care unit.

“I live here because I have a tracheotomy,” he explains. With his battery-powered ventilator and a nurse, he catches a bus from Bloorview each morning and heads over to kindergarten at a neighbourhood school. He and his six-year-old brother Kevin are in the same class (see photo above).

“We’re so close it feels like we’re twins,” Joey says, noting that he’ll soon be teaching his brother, who also has muscular dystrophy, how to use a power wheelchair.

When Joey got his first set of wheels at Bloorview, his independence blossomed. “He makes visits to other rooms and will approach other kids to say ‘Hi, how are you?’ even when he knows they’re non-verbal,” says nurse Corey Mackenzie Rath. “He’s a sweet, thoughtful boy.”

Joey is a social butterfly who never forgets a face. He’s also a chatterbox who loves asking questions and teasing staff. “I want to teach you how to play better, Lyn,” he says earnestly, sitting across from early childhood specialist Lyn Howlett at a game of Break the Ice.

Joey’s school nurse Kate Govia says he keeps her on her toes. “When we’re leaving in the morning, he’ll ask me: “Katie, do you have everything? Do you have the suction machine? Do you have my ambu bag?”

Last year Joey invited his classmates to visit his house, Kate says. “They had a field trip to see his room at Bloorview and Joey also showed them the pool and the creative arts studio. He was so proud.” end of article