Hunter syndrome, also known as mucopolysaccharidosis II (MPS II), is a metabolic disorder that severely limits the body’s ability to break down sugar molecules. A progressively debilitating condition, it affects about 30 people in Canada. The disease had moved slowly when Ibell was a child, but it advanced rapidly during his teens and early 20s. By the time of his cross-island ride, he was the height of an average fifth grader. His internal organs were bloated with waste his damaged body couldn’t expel, and his tongue had swollen to twice its size; he had trouble walking and breathing. His condition would be difficult for anyone to endure, but it was even harder for someone who lived for sports.
As a kid, Ibell played everything from basketball and rugby to baseball and soccer. “His desire compensated for his physical limitations,” his father, Roger, remembers. Simon joined a hockey team when he was eight years old, even though his rigid joints made it difficult to skate. “He just went into the goal and threw himself at the shots like a soccer goalie,” Roger says.
Ibell’s limitations soon became more pronounced. His teammates could run faster, jump higher and play longer. As his peers worked on developing their six-packs, increasingly distended organs gave Ibell what looked like a beer belly. He tired quickly and his joints ached; injuries his friends might simply walk off could put him into hospital.
His illness may have physically hobbled him, but it didn’t keep him off the field – or the court. When playing became too difficult, he coached and managed the rugby team at St. Michaels University School, where Nash, a family friend, was also a student. Later, Ibell took over the basketball team. “I always felt like I had a role on the team, that my job was as important as anyone else’s,” he says now.
After graduating from high school, Ibell continued to be involved. He managed the varsity team at the University of Victoria all the way to the national championships. And he spent his summers managing the Canadian national team, working with a promising upstart named Jay Triano, who went on to become head coach of the Toronto Raptors. It was during his undergrad that Ibell secured his reputation as an inspiring leader with a drive to win.
Ibell brought that same competitive team spirit to Bike 4 MPS, the charity he created in 2002 to fund research into Hunter syndrome and related disorders. He founded it after attending a conference set up for the small group with his disease (in addition to the 30 in Canada, there are between 350 and 500 people with Hunter in the U.S. and a total of about 2,000 worldwide). “I realized I had a voice to help others who literally don’t,” he says. “I thought I could make a difference, through my own voice and my network.”
Ibell asked his friends across Canada to collect pledges and held a fundraising night at his old high school. But it was an email to Mark Cuban, the billionaire owner of the Dallas Mavericks – a connection through Nash – that had the biggest impact. The day after Ibell fired off his email, Cuban was fined $125,000 for a courtside dispute with a referee. The hotheaded businessman had a habit of matching his frequent NBA penalties with gifts to charities, and the email from Ibell was fresh in his mind. Including the $125,000 that Cuban kicked in, Ibell was able to raise a quarter of a million dollars by the end of the summer.
As fundraising for Hunter syndrome research picked up, Ibell’s own future was increasingly precarious. Doctors were predicting he had only a year or two to live. As difficult as the news was to hear, it wasn’t a surprise – the National Institutes of Health, one of the world’s leading medical research centres, estimates that people diagnosed with early-onset Hunter syndrome will likely die between the ages of ten and 20. Over the years, Ibell had tried numerous experimental – and painful – treatments; by the time he was in his teens, he told his parents he was done being a guinea pig. “I just wanted to get on with my life and deal with my circumstances,” he says. With their reluctant blessing, he ceased treatments and focused on doing the most he could with the time he had left. Twenty-five years old and increasingly fragile, he was in a holding pattern.
Then, in September of 2003, things began to look up. Ibell heard about a Phase 3 clinical trial at the University of North Carolina at Chapel Hill. Run by an international expert on the treatment of Hunter syndrome named Dr. Joseph Muenzer, the trial would involve weekly trips to Chapel Hill, where subjects would receive hours of intravenous infusions of a new drug called Elaprase, a genetically modified enzyme that replaces the one missing in Hunter patients. Ibell was accepted into the study, and he and his mother, Marie, moved to Toronto to make the commute easier.
The treatment worked. Within a year and a half, Ibell’s disease was more or less shut down. After having come to terms with their son’s imminent death, the Ibells were shocked and overjoyed. Elaprase couldn’t undo most of the damage already wreaked: Though his organs had shrunk back to their normal size, Ibell’s fingers wouldn’t unfurl, he would always need hearing aids, and he wouldn’t magically shoot up a foot and a half to join Nash on the court. However, the drug had changed his prognosis. For the first time since he was a kid, Ibell was optimistic about his future, and he was determined to make his mark.
In 2005, Ibell took a marketing and fundraising job at Right to Play, a new charity founded by his friend Johann Koss, the gold-medal speed skater, to improve the lives of children in developing countries through sports. Ibell was quickly promoted to talent management and spent his days convincing star athletes to donate their time and names to the cause. It was a sports fan’s dream job. Ibell used his charisma and contacts to send Chicago Blackhawk Steve Montador to Rwanda and Tanzania, Olympic kayaker Adam van Koeverden to Liberia and Boston Bruin Zdeno Chara to Tanzania to work with and promote the organization.
Koss remembers the time Ibell charmed a group of NHL players and then introduced them to his boss for what’s known as the Big Ask. “One of the players told me, ‘I really trust Simon, and if you’re with him, you must be good, too,'” says Koss. It’s a common sentiment heard in reference to Ibell. Former coaching colleague Triano compares him to an elite athlete: “Some athletes reach the top and stop working. But the really successful ones carry the same values they always had even after they’ve reached the pinnacle.”
Simultaneously, Ibell worked on his own foundation, slowly and steadily raising awareness about Hunter syndrome. But in February 2010, just before the Winter Olympics in Vancouver, a new health scare renewed his sense of urgency. He came down with pneumonia, which is potentially fatal for someone with a weakened immune system. Ibell cancelled his trip out West to recuperate. “I had a bit of time to think,” he says, “and I realized maybe it was time to make the next move.” When he recovered, Ibell made the difficult decision to leave Right to Play, rented a small office in downtown Toronto and devoted himself to iBellieve, the new, larger incarnation of Bike 4 MPS.