If Will Bluderfield performing isn’t enough, I found out on the very same day that Simon Ibell will be speaking at our event. Everyone will have different motives for coming to our event. I would go to an event just to see Will or just to see Simon. Both of them, and their philosophies on life are inspiring, and for me, life changing. Each of them, in and of themselves, is reason enough to attend this event.
When Trey was diagnosed, I cried. All day, every day, for weeks. And that is an understatement. I wished I had ceased to exist. I had no hope. All I saw was despair. During this time, my mom sent an email out to a member of the MPS Society who lives with Hunter Syndrome. He and his mom called her back within the hour. Then my mom called me, crying. But not with fear and sadness like we had been for weeks, with hope. She had talked to Simon Ibell & his mom, Marie. It is hard to share exactly what they said or how they said it, that was so inspirational, so I won’t even try to repeat it. All I knew, was that for the first time in weeks, I didn’t wish I could somehow not exist. For the first time, I had a reason to live.
Then a couple of monthes later, I got to meet them. Hunter Syndrome is a progressive disease. So, although Trey had just been diagnosed, he had relatively few symptoms. Before I met Simon, a mom who has a child with MPS warned me that because of the progressive nature of the disease, adults with MPS may appear ‘different’, and to be prepared for that. I think she was trying to protect me. However, all I recall seeing was hope and inspiration. Here was a living, breathing, wonderful adult with MPS II. Trey didn’t have to die as a child. Hope. Then Simon spoke. Inspiration. I walked away from that get together thinking that if Trey could be half the person Simon has become, I would be the happiest mom in the world.
When I was drowing and didn’t know how to live, Simon pulled me up for air. However, since getting to know Simon and people who know Simon, I have learned that he has this impact on many. People who meet Simon don’t forget him. Faced with more in a year than I or most people will ever face in a lifetime, Simon has responded with brilliance and brightness and strength and has lit a light in this world that will not be forgotten.
I am so excited and honoured that Simon will come to Vancouver to speak at our event. I can’t wait for the opportunity to listen to and learn from him again. Simon, thank you. From the bottom of my heart.