Simon Ibell – The Man Who Refuses to Quit

A rare illness pushed Simon Ibell to the limit. A relentless, no-quit attitude helped him push back. Now he’s fighting to help others like him.

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Simon Ibell - The Man Who Refuses to Quit

 

Though he'd been a jock for as long as he could remember, Simon Ibell was nervous. He took a breath and, on a bright, chilly spring day in 2002, headed down a side street in Victoria, B.C., on a tricked-out road bike.

Ibell's goal was to eventually ride from one end of Vancouver Island to the other - 500 kilometres in all - to raise money for research into Hunter syndrome, a rare genetic disorder that had ravaged his body over the 22 years since he was diagnosed as a toddler. But first he had to make it down the street.

He started pedalling, picking up speed and confidence as he rode down one side of the street and back. But he soon found himself careening towards a busy intersection, out of control. Hunter syndrome had stiffened his joints and made it difficult to brake or even unfasten his cycling shoes from the pedals. On a collision course with a stream of cars, Ibell did the only thing that came to mind: He crashed into a bush. He was quiet for a moment, his feet still strapped into the pedals, his legs twisted at painful angles. Then he burst out laughing - he hadn't even made it 500 metres.

Ibell wasn't the type to be easily discouraged, however. Since his teens, he had been repeatedly told by doctors that he shouldn't expect to see his 21st birthday. He climbed back on his bike, and not only did he complete that ride across Vancouver Island three months later - with two friends, NBA point guard Steve Nash and champion mountain biker Roland Green, in tow - he went on to raise hundreds of thousands of dollars for an illness few had heard of. It marked the beginning of Ibell's mission to amass millions for research and bring rare diseases, including his own and more than 7,000 others, out of the medical shadowlands.

(Photo: Keith Beaty/Getstock.com)

Next: Ibell's teenage battle with a rare, life-changing illness.

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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.

Next: Simon gets a second shot at life.

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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.

Next: A health scare forces Gary to reconsider his priorities.

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In 2005, Ibell took a marketing and fundraising job at Right to Play, a new charity founded by his friend Johann Ko
ss, 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.

Next: How Ibell harnesses his positivity to help others in similar situations.

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His goal is to raise enough money -  $30 million by 2018 - to find a cure for Hunter syndrome
and build a dedicated research facility in Chapel Hill, which, thanks to Dr. Muenzer, is already the leading centre for research and treatment of MPS disease. Rare diseases receive little funding, and therapies are often more expensive than those for more common illnesses. Case in point: Ibell's Elaprase regimen costs $400,000 a year. In 2008, Ibell successfully lobbied the Ontario government to cover the cost of treatment for everyone with Hunter syndrome. He knows that other people with rare diseases are not so fortunate. "More people suffer from a rare disease than the big three combined: cancer, heart disease and HIV/AIDS," says Ibell. "And we get no funding. No funding for current treatments and no funding for research for new treatments." So, in addition to iBellieve, Ibell has founded Be Fair 2 Rare, an initiative to bring attention to rare diseases and the one in 12 Canadians who suffer from them. At the launch event held last February in Toronto, he raised $20,000 in two hours.

Awareness-raising is exhausting and competitive business, but Ibell is both a natural-born optimist and a seasoned activist. As Triano put it when talking about his one-time protege, "I would never bet against him." Why would you? Simon Ibell isn't just playing to win - he's playing to live.