Justin Peter Ronald Bouvier was born on Nov. 3, 1993, in Timmins, Ont., to Peter, a city bus driver, and Lori-Anne, a homemaker. The youngest in a blended family of seven children, Justin was a happy arrival for brother Harvey, who had five older sisters. Harvey had to wait for his new playmate, though; Justin was born three weeks premature and had pneumonia, and was sent to the McMaster Children’s Hospital in Hamilton. Once Justin did come home, Harvey was disappointed that his baby brother didn’t already know how “to play cars like I wanted him to.”
Justin was playing soccer with his brother, though, “as soon as he could kick a ball,” says sister Tanya. He was small but energetic, always running around, she says. “I told him, ‘With those muscular calves, you’re gonna be a soccer star.’ ” Harvey and Justin also joined karate, and, with their friend Josh, liked to pretend to be the crime-fighting brothers from the 3 Ninjas movies. Justin also loved to draw, and once made a guitar out of “whatever he could find, paper plates, straws, dental floss for the strings,” says Tanya.
Soon after Justin started school, Lori-Anne noticed that he tired easily when walking, and would push his bike around the yard instead of pedalling it. By the time he was seven, Justin was falling down a lot. Doctors diagnosed Justin with muscular dystrophy a year later. He was prescribed steroids (which caused him to quickly gain weight) to slow the weakening of his muscles, and started physiotherapy. Peter and Lori-Anne were told that Justin would likely not live to see his 20s. The stress took its toll on the couple, who split up later that same year.
After Justin got his first wheelchair at 10, he initially struggled to understand why people would stare at him in the mall. But his sister Shari-Lynn recalls how he quickly adjusted and was as cheerful as ever. He drew pictures of his chair decked out with flames on the side, and joked about going on the TV show Pimp My Ride. Justin planned to put his sharp sense of humour to work as a “sit-down comic.” Either that, or be a graphic designer. Or a musician. “He wanted to be everything,” says Harvey.
As his older siblings moved away, and with Peter living down south, Lori-Anne became Justin’s main caregiver, helping him with everything from special exercises to increase his lung capacity to making home-cooked meals (he hated fast food). Despite Justin’s physical pain and decreasing mobility, he took part in every activity he could: at school, he played board games in the youth rooms, helped other students with homework, and took part in assemblies. “He didn’t worry about being singled out” when he needed extra care, says principal Darren Berthier. “His attitude was, ‘if this is gonna help me get on with life, that’s great.’ ” Justin taught himself guitar, learning to play classics like Smoke on the Water. He also joined the Squires, the young men’s group of the Knights of Columbus, challenging them to accommodate his wheelchair, and became an Easter Seals ambassador.
To keep up with Justin’s full schedule, family and friends organized fundraisers and raised enough to buy an accessible van. When Justin’s Grade 8 class was going on a Toronto trip, family friend Jim Finnigan volunteered to drive Justin in the van. “More like he drove,” says Jim. “He’d tell you where to go, and point out the disabled parking spots.” In the city, “He got me up the CN Tower,” says Jim. “There he was, wheeling around on this glass floor, and I’m having a fit in the corner.” Justin “knew more than any of us how short his life was gonna be,” says Jim, “so he just wanted to live it.”
The morning of Oct. 9, after packing Justin’s lunch for school, Lori-Anne drove him to a doctor’s appointment. Justin hadn’t been feeling well and was having trouble catching his breath. The doctor told Lori-Anne to bring him to the hospital right away, and he was admitted with flu-like symptoms. He spent the weekend playing Wii and falling asleep to episodes of Home Improvement. Lori-Anne stayed by his side, only briefly returning home to pack up a Thanksgiving meal of turkey, mashed potatoes and carrots to bring back to Justin on Sunday night. Early Monday, Justin took a bad turn and the doctors suggested Lori-Anne call in the family. Though Harvey says he “fought to the last breath,” early on the morning of Oct. 14, Justin’s lungs failed and he stopped breathing. Later that day, doctors confirmed that the test for H1N1 they had ordered as a precaution on Friday had come back positive, and Justin had become the community’s first resident to die of the virus. He was 15.