Today’s short and slow run took me through the streets of downtown Toronto, and past the Ontario Legislature. I used to think that real change happened in that building – then my son was diagnosed with a rare disease. Suddenly, it became evident that we have a health care system that touts itself as the best system in the world, but only if you don’t need access to expensive medicines to stay alive. It dawned on me early in this battle that real change doesn’t happen in that Legislature or by the people elected to work there – it comes from us. It comes from the people who need it most.
Had we not worked so hard to change public policy, the people in that Legislature would have sat back and watched our son die. Same holds true for the other kids diagnosed with MPS in this Province. The people in that Legislature believe that treating symptoms is better than treating the disease – because it’s cheaper to do so and helps to keep their budgets in check. But tough action, determination, and a brave fight by our kids and families has helped ensure access for many who need it. There is a new battle brewing, one that will take place in the very near future – a battle for access to treatment for our MPS VIA kids. I’ll be there to lead the charge because I believe in a health care system that is fair and equitable for everyone – even if you happen to have a rare disease, even if you need access to an expensive medicine to stay alive.
So – this warm up run is dedicated to the incredibly brave families I’ve met here in Ontario, and to the patients who are the bravest of all. I’m so lucky to know you and I’ll be running for you in Ottawa. This is for Isaac, Jasper, Lillian, Jack, Avery, Luke, Zane, Derric, Dawn, Riley, Tyler, Jordan, and Ayub!