The Boy Who Wouldn’t Die - by Robin Harvey
Some people thought Azeem Kayum was crazy when he decided to go out for track last year and enter the 100-metre dash.
“I came in last, but I was still in the race,” the 16-year-old Grade 9 student says, flashing a heart-melting grin.
It sums up the Stouffville teen’s attitude so well, it should be emblazoned on his T-shirt. Doctors had initially said Azeem, who was born paralyzed from the neck down after a birth injury caused severe respiratory and spinal cord damage, would never walk or talk.
At one point early in his life, his parents were advised to pull the plug and they had planned his funeral.
But, Azeem has beaten all the odds and turned 16 in December.
Though he has many medical problems and some degree of learning disability, he remains a fighter who has developed a razor-sharp wit balanced by a winning charm.
“You have to do what’s opposite of what they expect you to do. If that’s nothing-do something. Don’t give in.”
Azeem spent his first year in the Intensive Care Unit at the Hospital for Sick Children. At age 2 1/2, he suffered two cardiac arrests in 10 days and was in a coma for nearly two weeks. In the end, he had to have a surgical opening put in his throat so he can breathe at night with a ventilator.
As a result, everywhere he goes, he must take a portable suctioning device to clear his tracheostomy opening-on a good day, as often as six times a day, on a bad one, more than a dozen.
In the last few years, he has undergone surgery on his legs because they were not developing properly due to his partial paralysis. He can’t do anything strenuous and even a mild cold can be life-threatening as any type of infection hampers his already delicate and undependable breathing.
But, he says he never let it get him down.
“There was that time I almost died,” he says of a particularly serious bout of breathing trouble, when he tried, unsuccessfully, to wean himself off nighttime ventilation. “But, I made it.”
Azeem’s special education teacher, Beverly Carson, who is now in charge of monitoring his progress at Markville Secondary School, says he’s “simply amazing.”
“I have never encountered such a diligent, dedicated, wonderful young man,” she says. “He is a wonderful role model for all the other students. His positive attitude wears off on everyone. I feel honored to work with him.”
Asked what his goals for the future are, he points to the dime-sized hole through which he breathes at night and suctions his throat during the day.
“Getting this thing removed.” If he didn’t have the trache, and could breathe better on his own at night, Azeem says he’d be more independent. Now he has to have a nurse or parent with him wherever he goes.
“It’s tough on the social life.”
“People ask me in school about the trach. They don’t understand. Someone asked me if it was a decoration. I wish,” he says as he rolls his eyes.
He was somewhat embarrassed that his mother had to go to his high school earlier this year to explain the suctioning device and his medical problems to the students. “Now they’ve gotten used to it because my mom went and talked to the kids. They wouldn’t accept me.”
That’s part of the reason he’s so supportive of his mother’s latest project -a self-published book that outlines his and his family’s struggles.
“The book is going to let people know what is going on. I’m just a guy.”
Despite his obvious close ties to his mother, Azeem unceremoniously shoos her out of the room to conduct this interview alone.
Like most teens, Azeem is walking the line between dependence and independence - a journey made tougher by his physical limitations. Still, he went out for a public speaking contest in Grade 6, and made it to the finals, speaking on the topic “The Brain and Me.”
His father, Faizal who works as a senior consultant at a bank, his younger sister, Lisaan, and his mother watched a videotape of the contest, fearing if they went in person, Azeem would be too nervous.
In his speech, he told about how the brain functions and how his had been damaged with the result that he could not automatically breathe when he is sleeping. He summed up with “Wear helmets when you ride your bikes. Do what you can to protect your brain. Don’t take it for granted. I know how tough it is when your brain does not work well. Trust me, it can be very frustrating at times.”
Today, Azeem says he’d like to eventually end up as a wrestling commentator.
“They have most of it memorized, so my reading shouldn’t be a problem.”
He’s been hooked on the WWF since age five.
His hero is Shawn Michaels, and he spends hours reading wrestling magazines. He dreams of being hooked up to the Internet so he can access the wrestling websites.
Beyond that, Azeem says other important things in his life are girls, music and friends. His family has their house up for sale so he can be close to his high school in Markham. The family lives in Stouffville and Azeem is driven to school every day in their van.
That way, he’d be able to go out with his friends more often, like when he went to see Mortal Kombat in the summer.
Food is also big on his list of likes. He likes to eat two Whoppers when he goes to Burger King. He also likes to help his mother cook.
Azeem has met with other young kids living with a trach. He gives everybody the same advice he gives himself.
“Just never give up. Live life one day at a time,” he says. “I try to procure a lot of self-esteem. You have to build your confidence.”
