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.”