Mr. Speaker, I would like to begin by thanking those members of the parties who have supported this motion. I need to give particular recognition to the Parliamentary Secretary for Health, the member for Charleswood—St. James—Assiniboia, for the support he has given in helping to craft the amendments and work this motion through the government.
The inspiration for Motion No. 426 is found in the Canadian Organization for Rare Disorders “Chance for Life Fund”. This is an action plan that CORD developed to address this issue and begin the process of establishing a made in Canada policy that will ensure patients with rare disorders have the exact same right and access to effective therapies or the same chance for life as all Canadians.
Durhane Wong-Rieger, president of CORD Canada, has been very helpful in drafting this motion also. I should mention that my son, Darren, is not associated directly with CORD but is in fact the president of Pulmonary Hypertension Association of Canada and has also been of assistance.
I am sure many Canadians can identify a family member or friend who suffers from a rare disorder. It affects one in eight Canadians as either a carrier or in fact a sufferer from a rare disease.
In my own riding, young Nicklas Harkins has MPS 1, an enzyme deficiency disease that is life-threatening. Eleven-year-old Szymon Cajmer from Toronto and young Trey Purcell from North Vancouver have MPS 2, otherwise known as Hunter syndrome.
Quite often, members are motivated by personal experience or tragedy to champion an issue. In my case, my grandson, Dylan Hunter Bell, was diagnosed with pulmonary hypertension at the age of two. For the last 10 years, Dylan required continual drug treatment administered directly into his heart, delivered from an intravenous pump which he wore in a backpack on his back. He was able to lead an activity restricted but otherwise generally normal life. He attended public school, played with his dog Teddy, was a whiz with computers and enjoyed meeting people. He would visit and take plush animals, which he called “stuffies”, up to other children who were hospitalized in the Children's Hospital in Vancouver. He passed away July 14, 2007, the day after his 12th birthday.
I consider this motion to be a legacy to my grandson Dylan and to add meaning to his short life and the challenge he faced so bravely, as well as the many others, both patients and families, who continue to face personal health challenges in dealing with rare diseases.
I have heard it often said that a nation can be measured by how it treats its most vulnerable citizens, the elderly, the young and the sick. This is a way in which we can show that Canada is one of those nations that is to be recognized and honoured for the way it does treat its most vulnerable.
It is also often said that a long and difficult journey begins with a single step. I would suggest that this motion represents not only one but several steps in this journey for rare disease patients and their families.
I again thank the House for the support that is given for this and I look forward to the passage of this motion.