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In 2002, Simon Ibell cycled 500 kilometres across Vancouver Island, joined near the end by pro-basketball player Steve Nash and Olympic triathlete Simon Whitfield. The marathon raised $250,000 for medical research

Peter Blashill/The Globe and Mail

Simon Ibell defied convention in almost every aspect of his challenging life. An outspoken voice for a community of those suffering from rare diseases, he had Hunter syndrome, a metabolic disorder arising from genetic mutation. Before dying in his sleep on May 26 at the age of 39, Mr. Ibell was one of fewer than 30 people in Canada, and roughly 2,000 worldwide, living with Hunter syndrome. Also known as mucopolysaccharidosis II (MPS II), it is one of a group of six metabolic genetic disorders. People with MPS II lack an enzyme that breaks down sugar chains used to build bone and connective tissue. Without breaking down, these chains build up in the body – causing organ damage and distinctive facial structures. Mr. Ibell was dismayed that a medical textbook described the features associated with Hunter – including a high forehead and enlarged tongue – as "gargoyle like," but he'd endured worse.

Doctors predicted Mr. Ibell wouldn't live past the age of 5, then 10, then 20. To the dismay of his parents, when he turned 14 he refused further treatments. He was tired of being a medical curiosity and undergoing experimental procedures that were frequently painful. He finally said, "I just want to be me. Enough is enough."

Naturally charismatic with a dry sense of humour, Mr. Ibell had a wide circle of friends and an active social life but he didn't meet another person with his ailment until he was in his 20s. In 2003, Mr. Ibell was accepted into a clinical trial for a new drug called Elaprase, an enzyme genetically modified to replace the one missing in Hunter patients. The trial, overseen by international expert Dr. Joseph Muenzer, at the University of North Carolina, required hours of intravenous infusion every week.

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As the 4-foot-8 Mr. Ibell waited in a conference room at the university, he was joined by another young man like himself with aching joints, shortness of breath and who tired easily. As in Mr. Ibell's case, a swollen liver and spleen gave the man the appearance of having a beer belly. Mr. Ibell's counterpart was also dealing with potential damage to his organs, a degree of deafness and the possibility of going blind. It was a visceral connection. Mr. Ibell told the Toronto Star, "It was as if a weight had been lifted from my shoulders. It was the first time I truly realized that other people go through what I go through." The realization triggered a strong urge to bring his disease out of the shadows and crusade to help others.

Elaprase proved successful in curtailing the progress of his disease, but Mr. Ibell was already an adult. Administered early enough, the drug could significantly improve the quality of life for children with Hunter. The problem was money. At a cost of $400,000 a year, the drug was one of the most expensive ever made. Despite being approved by Health Canada in 2007, it was not covered by the Ontario Health Insurance Plan. At Mr. Ibell's request, basketball superstar Steve Nash, a high-school friend, made a YouTube video in 2008 that helped convince the provincial government to cover costs of the drug.

By then Mr. Ibell was an old hand at raising consciousness and money. In 2002, he had cycled 500 kilometres across Vancouver Island, joined near the end by Mr. Nash and Olympic triathlete Simon Whitfield. The marathon raised $250,000 for medical research. For his efforts, Mr. Ibell was named Canadian Spirit of Sport story of the year. The recognition meant a great deal since he was up against Olympic champions – the figure skating duo David Pelletier and Jamie Salé. In 2005, he set up the iBellieve Foundation to advocate for Canadians with rare diseases. He also developed a successful career in the arena of his greatest passion, sports.

When he was born in Toronto on Dec. 6, 1977, Marie Ibell, a lawyer and senior executive at the Hudson's Bay Company, was told that her son, Simon Richard Ibell, would grow to be at least 6 feet tall. Roger Ibell, a corporate retail executive and sports enthusiast, was delighted. But it soon became apparent that something was amiss.

Simon had trouble walking and often fell. Ms. Ibell's concerns were dismissed by several doctors, who felt she was an overprotective mother. Her concerns were finally validated during a vacation in England when a geneticist friend of Ms. Ibell's father asked her what was wrong with Simon.

He told her to bring the boy to his office the next day. Hair, blood and urine analysis were conducted at Great Ormond Street Hospital in London. The results were conclusive: Hunter syndrome. The hospital's doctors had previously encountered only four cases. The children had all died before the age of 5. But the Ibells refused to accept a death sentence or any other limitations for their son. When doctors at Toronto's Hospital for Sick Children told Ms. Ibell to put her 6-year-old in a wheelchair and avoid sports, she marched out and bought him soccer shoes and goalie pads. He was soon kicking soccer balls and playing hockey in local leagues. Though lacking the mobility to skate, he could certainly position himself in front of the goalposts and throw himself at any advancing puck, something he did with great enthusiasm.

Meanwhile, the Ibells searched for treatment. In 1990, they moved to Victoria to be close to a Seattle hospital known for bone-marrow transplants. The painful treatments were thought to help, but they didn't. By this time, the family also included a nine-year-old daughter, Olivia. The siblings were extremely close. "He always inspired and encouraged me. He made me believe I could do anything," his sister, now known as Olivia Gilbert, said.

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With family support, a positive attitude and mental faculties that remained unaffected by his condition, Simon excelled in his studies. His parents enrolled him at St. Michael's University School, a prestigious private institution in Victoria where he was the only student with a visible disability. He became the target of bullies. Two fellow students sent Simon a cartoon of him falling off a cliff in a wheelchair (though he had never used one) and being eaten by fish. The caption read "St. Michael's is not for the deformed." The bullies were threatened with expulsion but Simon convinced the headmaster to keep them in school so they could learn to get over prejudice. In an interview with the Toronto Star, Ms. Ibell said the whole school learned of the incident. Weeks later, running at a track meet, Simon was two laps behind everyone else. By the time he crossed the finish line the entire school was standing and shouting "Si-mon. Si-mon."

"After that, they had an incredible level of respect for him," Ms. Ibell said. Years later, one of the bullies tracked him down to apologize and thank him for the valuable lesson in tolerance.

As his condition continued to deteriorate, Mr. Ibell moved to the sidelines to manage the high school's basketball and soccer teams. After high school, he earned a BA in Leisure Studies Administration at the University of Victoria. He became manager, statistician and administrative assistant of the university's basketball team.

During summers, he worked with Jay Triano, who later become head coach of the Toronto Raptors, to manage the Canadian national men's basketball team. Mr. Ibell travelled with the team to South Korea. He called it "a dream come true."

Basketball would continue to play an important role in Mr. Ibell's life. Through his friendship with Mr. Nash, Mr. Ibell was introduced to Mark Cuban, billionaire owner of the NBA's Dallas Mavericks. The two became friends after the businessman contributed significantly to the money Mr. Ibell raised during his marathon bike ride. "Nash and his friends called him 'small balls' and he loved it," Mr. Cuban commented in the Star. Within minutes of a request by e-mail from this reporter Mr. Cuban responded, "I love Simon and I'll miss him dearly."

If there was one thing missing from Mr. Ibell's life it was romance. He eventually started dating a woman who was studying linguistics. The relationship lasted 18 months before she ended it, unable to come to terms with his limited life expectancy.

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Heartbreak was yet another challenge he had to overcome. He's quoted in The Globe saying, "I've always believed there was someone worse off than me. I just had to get on with my life."

In 2005, Mr. Ibell took a marketing and fundraising job at Right to Play, a charity founded to improve the lives of children in developing countries through sports. He persuaded star athletes to donate their time and names to the cause. It was a sports fan's fantasy job realized. Mr. Ibell also worked with the National Speakers Bureau as a motivational speaker and continued his fight to find a cure for Hunter syndrome through iBellieve, the foundation that incorporated his surname. Mr. Ibell never gave up his activism on behalf of rare diseases. He leaves his mother, Marie; father, Roger; sister, Olivia; brother-in-law, Cameron Gilbert; niece, Emily; and nephew, Andrew.

In Reader's Digest Mr. Triano said he would never bet against Mr. Ibell. "Why would you? Simon Ibell isn't just playing to win. He's playing to live."

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