I walk into the ward at Sick Kids Hospital, and with the help of two patient nurses, I’m directed to the room I’ve been looking for. The room is spacious and lined with lounge chairs. Each chair is occupied by a child with their own IV, reading books and watching shows on portable devices, prepared for the long wait. Matt is in his own chair, with an IV tube in his arm. His mother, Sally, is sitting beside him. She waves me over.
Matt only started doing IVIG (intravenous immunoglobulin) therapy last May. He gets IVIG therapy every four weeks, thirteen times a year, travelling from his home in Barrie to the hospital in downtown Toronto. “We leave at quarter to seven in the morning,” Sally tells me, “and get back at quarter to seven at night.”
Matt tells me he reacts badly to the IVIG infusions, which take up to five hours to complete. His reactions range from full body aches, to shaking and dizziness. He doesn’t want to eat and is exhausted; sometimes these symptoms can take a week to subside. The nurses give him pre-meds to limit the reactions.
Sally and Matt have been going to Sick Kids Hospital for about nine years. They assure me that almost all the nurses know him. Matt was diagnosed with CVID (Common Variable Immunodeficiency) only last year, after years of testing and bloodwork. As a child, Matt was always sick, especially between the months of November and April. Since he was six years old, he had managed to get chicken pox, shingles, and mono, among other infections. He perforated his eardrum three different times, and admits that he can’t hear as well as he used to. Sally mentioned how the third grade was a memorably rough year; he had high fevers and was out of school for approximately one hundred days.
He’s fifteen now, going into grade eleven. He lives at home with his mom, his dad, and his sister, who give him valued support. He loves basketball, which is why he’s working at Thunderhoops. It’s his ninth year at the basketball camp, except now he’s a coach instead of a student. Matt has proven himself to be an incredibly responsible teenager. If it’s the school year, he goes to his classes, comes home, and is in bed by 8:00pm. He doesn’t go out on weekends. He takes multiple vitamins, eats “clean”, and washes his hands regularly. While it seems like a strict lifestyle that the average teenager avoids, Matt understands that this is the way he can manage his illness.
While on one level Matt accepts his illness, on the other, he pushes against it. When he was younger, his feelings about his condition were so strong, that his parents sought emotional counseling. The sessions stopped, because his parents had to practically carry him to appointments. Nowadays, Matt rebels against his condition in small ways by pushing himself beyond the limits of his energy.
In the past year, he has been pushing himself in other ways: he’s been using his voice to spread the word about primary immunodeficiency. Last October, RN Brenda Reid (who has known Matt since he was little) gave him a brochure for Immunodeficiency Canada and introduced him to CEO Richard Thompson. Matt was asked if he wanted to be in the 10 Warning Signs PSA. Soon enough, Matt was staring at his face on an enormous screen in Yonge-Dundas Square in downtown Toronto. “It was weird,” says Matt. “It was really weird.”
Knowing his face has been seen by countless people in the square and by thousands on the internet hasn’t deterred Matt from wanting to spread the word about PI. He has more platforms to talk about his condition, including this interview for Immunodeficiency Canada. When I ask Matt about other possibilities in his future, he says: “I’d like to go university. I wouldn’t like for my opportunities to be confined by my sickness.”
Matt is a teenager that is finding a balance between consciously managing his illness and pushing its limits. He is someone who knows how to cope with his condition, but he will not be confined by it.