As we approach National School Run Day (Terry Fox Run), the topic of heroes is often discussed and reflected upon in our classes. To me, a hero is someone that inspires me through his/her courage and dedication as well as the manner in which he/she lives his/her life.
I am so privileged to have one of my life heroes as one of my good friends. I met Simon Ibell when I was in 2nd year university at the University of Victoria. He worked as the manager of the men’s basketball team and I worked at the equipment desk at UVIC’s McKinnon gym. Our friendship started with jabs as he was a Leafs fan and I was a Canucks fan (these jabs continue today). The thing that drew me to Simon was the positive nature in which he lived his life. Every time he came down those steps to get the equipment for the men’s team, he had a huge grin on his face – if he was ever having a bad day (and I am sure he had a few), he never let it be known.
The more I got to know Simon, the more I saw the social magnet he was; people were drawn to him throughout the campus. What normally took me 5 minutes to cross the campus, with Simon it took four times as long – not because his steps were shorter but because he knew everyone and they all stopped to chat and smile with him. #positivity
Simon and I never really spoke about his disability until one day, I asked him to tell me more. He informed me that he had MPS II (mucopolysaccharidosis II) or Hunter’s Syndrome; this meant he lived in physical pain due to being deficient in an enzyme which affected his joints and major organs (particularly heart and respiratory). He lived a life in which his body filled up with cellular waste – like a “kitchen that cannot get rid of the garbage”. His family had toured the world looking for treatment but came up short each time. #perseverance
As our friendship grew, so did the will to fight for a cure and advocate for others. While still in UVIC I had the privilege of travelling with many of Simon’s friends on a tour of Vancouver Island, Bike4MPS, to raise awareness and money for the fight to conquer MPS. Although it was exciting to be on a tour with the likes of NBA star Steve Nash, Olympic gold medal-winning triathlete Simon Whitfield and cyclist Roland Green – the moment that brought us all to tears was Simon completing the tour and raising $250 000 for the cause. The same guy that ran out of breath walking across the campus of UVIC had now trained so much and pushed himself so hard that he was able to bike 500 kms from one side of Vancouver Island to the other. #courage
The fight to conquer MPS II continued to grow as Simon graduated from UVIC, moved to Toronto to start his Master’s, be closer to his family,and travel to University of North Carolina Medical Center to take part in a drug trial of enzyme replacement therapy. The drug trial was so successful that Simon knew he had to fight to get this drug approved in Canada. Through his unwavering leadership, dedication, along with the support of friends like Steve Nash, Simon was able to fight and convince the Ontario government to approve and fund the drug that would normally cost $400 000 a year. Now, many children with MPS II can benefit from this treatment by having an improved health and overall way of life. #leadership
It does not stop there. Simon continues to dedicate his entire life to build and help others through his leadership in his own foundation, iBellieve, whose mission is to find a cure for MPS II, as well as the organization Be Fair 2 Rare, which is aimed at raising awareness, funds, and advocacy for the rare disease community in Canada. #hero
From the Reader’s Digest article on Simon ”The Man Who Refuses To Quit”
”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.”
There is also currently a kickstarter video to raise money for a full documentary on Simon and many other families involved in the fight to conquer MPS II. You can view the mini documentary called “Boys With Bigger Hearts” below.
Beyond donating to his cause, I have always wanted to give back to Simon for all that he has done, and continues to do, for me. By writing this I am hoping you can help Simon in his efforts to impact so many others. In your various networks, please SHARE HIS STORY. You can support Simon’s cause by choosing one or many of these options:
- Follow Simon and his foundation on Twitter at @iBellieve
- Like the Facebook Page.
- Check out his websites: www.ibellieve.com and www.befair2rare.com
- Watch and share the Vimeo video about Simon below.
- Read the Reader’s Digest article on Simon.
- Watch, share, and support the Kickstarter Video of “Boys With Bigger Hearts”.
- Share this post to help share his story and fight to end MPS II.
- Donate to any or all of the great organizations in which Simon is promoting and leading.
To find out more about Simon, you can watch this video on his fight to conquer MPS II.