When Simon Ibell ’96 visited SMUS this Monday, the event had a special significance: Simon chose his old high school to be the place where he officially launched his Ibellieve fundraising campaign to find a cure for Hunter Syndrome and related diseases. After years of advocating for better rare disease policy and promoting Right to Play, Simon is a veteran public speaker and he captivated students from Grades 4-12 with his insight, humour and candor.
Listen to Simon Ibell’s speech: SimonIbellSpeech
Simon’s story is well-known: diagnosed with a rare disease, he was never expected to live past childhood, but he has lived an active life and is now 33 years old. He shared this journey with the students, but he also spoke about his time at SMUS. Simon was the first student with a visible disability and when a few of his peers were threatened with expulsion for bullying him, Simon actually fought for those same kids to stay at the school and learn from their mistake. He also credits the school with finding a way for him to stay involved with sports, as he was encouraged to take on a managerial role for SMUS teams and even a UVic team.
Simon also showed students, by his own example, to look past their own problems and see what they can do to help others. After years of struggling to find treatment, Simon eventually decided he would rather live his life than be a guinea pig. However, when he discovered an expensive medicine that improved his health, he was inspired to begin a political campaign so that other sufferers could benefit.
The message that Simon imparted to our students is that being different is often perceived as being a disadvantage. Yet, we are all different in some way, and often the way that we are different from others is what helps us shine. Our differences shouldn’t prevent us from entering the spotlight or pursuing our own goals, and we should embrace the things that make us stand out from the crowd—the things that make us rare—in order to push the boundaries of unique potential.
Grade 4 and 5 Students on Simon’s Visit
“Simon’s presentation was inspiring, and will be to everyone around the globe. He is inspiring and amazing. When you listen to him, you can’t tell the difference, but inside, he stands out from all the rest.” -Meredith
“Simon’s messages to me were don’t give up, ‘Bellieve’ in yourself and dare to be rare. He also said don’t think about what you can’t do, think about what you can do… he didn’t just give up, he kept believing that he could make a difference.” -Matthew
“I enjoyed listening to him and it motivated me to try hard at things that are difficult in my life. At 33, he is an inspiration to us all!” –Connor
“I felt like I can make a difference. I liked that he was not ashamed to talk about what he felt when he learned he had a disability. I liked when he said, ‘Don’t focus on the disability, focus on the ability.” He really inspired me to be more than the person I am.'” -Georgia
“To me, Simon Ibell is a true leader because against all odds he made a difference…Simon Ibell is a true Canadian leader for his perseverance, his compassion and his generosity.” –Emma J