For most of his life, doctors predicted each year would be Simon Ibell’s last. He defied them for nearly four decades.
Ibell, whose life of quiet resolve was an inspiration to many, died on Friday at 39.
Victoria-raised Ibell was an advocate for people living with rare illnesses. He suffered from Hunter Syndrome, a genetic condition also known as MPS II, which limited his growth to four-foot-eight. He had only met one other person with the affliction. Life expectancy is short. Doctors told his parents he would not live past age five and were astounded by Ibell’s longevity, describing him as a “best-case scenario.”
Among the many things Ibell did to raise funds and awareness was cycle the length of Vancouver Island, from Port Hardy to Victoria, in 2002. When he came into the home stretch, Ibell was joined by an honour guard comprising two of the Island’s greatest athletes, with two-time NBA MVP Steve Nash riding on one side and Olympic gold-medallist triathlete Simon Whitfield on the other. Ibell’s ride raised $250,000 for research into rare diseases.
His connection to sports began when he was bullied in Grade 8 at St. Michaels University School and three people came to his aid. They were Grade 12 basketball stars Nash and Milan Uzelac, along with coach Ian Hyde-Lay.
Ibell became student-manager of the basketball teams at SMUS, and later at the University of Victoria with the Vikes, and also with the Nash-captained Canadian team in the years leading up to the 2000 Sydney Summer Olympics.
“Simon’s attitude was so positive despite all the obstacles he faced,” Hyde-Lay said. “He displayed amazing courage, and with a complete absence of self-pity. He always battled back and out-lived all expectations.”
Ibell’s story was reported widely, up to the pages of Reader’s Digest. “Life swings on small hinges. I never dwelled on my so-called disability,” he told the Times Colonist in 2012.
Despite his physical limitations, Ibell did all that was required of a basketball manager. In five years as UVic manager, he recorded game statistics and made arrangements for Vikes’ airlines and hotels for Canada West away games while earning his degree in leisure services.
Ibell received the Distinguished Alumni Award from UVic in 2012, a recognition he cherished.
“It was an incredible honour because UVic was such a pivotal place for me in both terms of schooling and managing the Vikes,” he said at the time.
The Hyde-Lay/Ibell Scholarship annually funds a year of education at the private school for a student-athlete who would not otherwise be able to attend. The endowment is funded by Simon Ibell, his sister and fellow SMUS-grad Olivia, and their mother, Marie. Ibell is also survived by his father Roger Ibell, brother-in-law Cameron Gilbert, niece Emily Gilbert and nephew Andrew Gilbert.
“When I was told at 13 that I could not play sports, it was a blow to my psyche,” Ibell said, during the announcement of the Hyde-Lay/Ibell endowment at SMUS in 2015. “But Ian Hyde-Lay found another role for me. It instilled in me a confidence that I needed most at that time.”
Ibell was a true battler who found ways to give back, despite the compromised physical nature of his life. He was later based in Toronto, where he founded the Be Fair 2 Rare public outreach program to increase awareness, funding and advocacy for people with rare diseases in Canada and also the iBellieve Foundation, which advocates for Canadians with rare diseases.
Marie Ibell said: “Simon was the most human of human beings. As a mother, I couldn’t have been more proud of him.
“We have received messages from around the world and that shows the impact Simon’s life had on others. He never felt sorry or thought of himself first. He was always thinking of others.”
Ibell’s funeral will take place in Toronto on Thursday.
