[youtube]http://www.youtube.com/watch?v=iPhisB8_-wM&feature=player_embedded[/youtube]
It was our first MPS conference in July 2006. Trey was diagnosed in February 2006. Enzyme Replacement Therapy (ERT) for MPS II, Elaprase, was about to be approved by the FDA (it was approved on July 24) and we were gearing up for our fight to get this drug for Trey in Canada. Just before we left for the conference, we saw an article on the cover of The Globe and Mail about a boy with MPS VI whose family was fighting for the Ontario government to fund the already FDA approved Enzyme Replacement Therapy for MPS VI, Naglazyme.
The conference began on a Friday. We checked into our hotel room and walked out to the playground at the hotel. I recognized the family from the The Globe and Mail immediately. It was Andy, Ellen, Isaac and Gabriel McFadyen. Within moments of introducing ourselves, Ellen told me that Isaac’s ERT had been approved by the Ontario government just hours ago. I didn’t know this family at all and had met them less than a minute earlier, but I was in tears. Trey and Isaac were weeks apart in age. They were diagnosed only monthes apart. We were about to start fighting for ERT, and Ellen and Andy’s monthes long fight for ERT had just ended. They also had a second son, Gabriel, who is only 3 days younger than Avery. These were just the factual similarities. Getting to know them was even better and they became family. It’s hard to describe, but it’s like we can feel each other to the core- they know exactly how and what I feel and vice versa. We are deeply connected. Today, Andy and Ellen launched Project One Million and we are joining them in their quest.
Please visit Andy and Ellen’s website (www.projectonemillion.ca). Watch their video. Share it on Facebook and Twitter. Each week they are targeting one celebrity to help them spread the word. This week, help us reach Ellen Degeneres (http://www.projectonemillion.ca/shareitforward/). Stay tuned for next week. We only need a million dollars. In Andy’s words, let’s spark a million conversations, a million shares and likes, so that we can raise a million dollars. It’s not out of reach!
