Mr. Speaker, I would like to express my appreciation for the parliamentary secretary's support in bringing this motion forward.
As I mentioned, my first awareness was when my grandson, at age three, was diagnosed with what we found was in effect a terminal disease: pulmonary hypertension.
As any member who suddenly finds a family member with a rare disease or life threatening illness, after getting past the period of shock, I began to look into it. I found out more about the disease from a website and worked with my son and his wife to try to find out if there was a cure, if there was a way in which we could deal with it and to avoid what was obviously a life threatening consequence.
I can say that Dylan, at about age three, was treated; he was given a 24 hour intravenous pack which he wore for the last nine years of his life. He wore it when he went to bed. He wore it during the day time. His illness affected his ability to participate in regular life activities. He went to a regular school, but he could not perform any of the physical activities because he would be short of breath, part of the side effects of his condition.
One of the first drugs he was on had a life cycle of about 30 minutes. That means, if the alarm went off indicating his pump had failed, we had about 15 or 20 minutes to get him to a hospital, with the risk of him passing away at that moment. Hon. members can imagine the pressure that puts on a family.
Through that and through my son's involvement in the Pulmonary Hypertension Association of Canada, and he is now the president, I became aware that there were many other diseases, particularly by talking with people from CORD. I became aware that this was only one of many diseases that affects people in this way. I mentioned Nicolas Harkins in my own community. The story about another young man is in today's Globe and Mail.
One in twelve Canadians are either carriers of or affected by rare diseases. What I heard from CORD, and from the patients, the caregivers and the families was that the problems in the Canadian system that I have identified were access to treatment, therapies and the approvals.
I determined, as Dylan's legacy, that I would do what I could in my position as a member of Parliament to bring forward what I hope, with the help of the government, would be an effective way of addressing those problems.