{"time": "2008-04-14 11:20:00", "attribution": {"en": "Mr. Don Bell", "fr": ""}, "content": {"en": "

Mr. Speaker, I would like to express my appreciation for the parliamentary secretary's support in bringing this motion forward.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

", "fr": "

Monsieur le Pr\u00e9sident, je sais gr\u00e9 au secr\u00e9taire parlementaire d'appuyer la pr\u00e9sentation de cette motion.

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Comme je l'ai mentionn\u00e9, ce qui m'a incit\u00e9 \u00e0 m'int\u00e9resser \u00e0 la question, c'est qu'on ait diagnostiqu\u00e9 chez mon petit-fils, \u00e2g\u00e9 de trois ans, une maladie mortelle: l'hypertension art\u00e9rielle pulmonaire.

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Comme quiconque d\u00e9couvre qu'un membre de sa famille est atteint d'une maladie rare ou d'une maladie potentiellement mortelle, j'ai \u00e9t\u00e9 sous le choc. Toutefois, pass\u00e9 cette \u00e9tape, j'ai commenc\u00e9 \u00e0 me renseigner. Un site web m'a permis d'en savoir plus sur la maladie et, avec mon fils et sa femme, j'ai tent\u00e9 de d\u00e9couvrir s'il existait un traitement et si nous pouvions faire quelque chose pour \u00e9viter les cons\u00e9quences potentiellement mortelles.

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\u00c0 l'\u00e2ge de trois ans environ, Dylan a re\u00e7u un traitement. On lui a donn\u00e9 des m\u00e9dicaments administr\u00e9s par voie intraveineuse de mani\u00e8re continue et il les a pris pendant les neuf derni\u00e8res ann\u00e9es de sa vie. Il portait le sachet intraveineux le jour et pour aller au lit. Sa maladie nuisait \u00e0 sa capacit\u00e9 de participer aux activit\u00e9s de la vie courante. Il fr\u00e9quentait une \u00e9cole normale, mais ne pouvait pas faire d'activit\u00e9 physique, car il avait le souffle court. C'\u00e9tait un des effets secondaires de sa maladie.

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L'un des premiers m\u00e9dicaments qu'il a pris avait un cycle de vie d'environ 30 minutes. Ainsi, si une alarme nous indiquait que sa pompe ne fonctionnait pas, nous avions environ 15 \u00e0 20 minutes pour l'amener \u00e0 l'h\u00f4pital et il risquait de mourir \u00e0 tout moment. Les d\u00e9put\u00e9s peuvent imaginer la pression que cela exerce sur une famille.

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Compte tenu de mon exp\u00e9rience familiale et gr\u00e2ce \u00e0 la participation de mon fils au sein de l'association canadienne de l'hypertension art\u00e9rielle pulmonaire, dont il est aujourd'hui le pr\u00e9sident, j'ai appris \u00e0 conna\u00eetre bien d'autres maladies, en particulier en m'entretenant avec des repr\u00e9sentants de l'organisme CORD. Je me suis rendu compte qu'il ne s'agissait que d'une maladie parmi tant d'autres qui affectent les gens de cette fa\u00e7on. J'ai mentionn\u00e9 Nicolas Harkins, qui vit dans ma collectivit\u00e9. Le Globe and Mail d'aujourd'hui raconte l'histoire d'un autre jeune homme.

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Un Canadien sur 12 est porteur ou atteint d'une maladie rare. D'apr\u00e8s ce que m'ont dit les gens de l'organisme CORD, des patients, des soignants et des familles, les probl\u00e8mes du syst\u00e8me canadien, ce sont l'acc\u00e8s aux traitements et aux th\u00e9rapies et les approbations.

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J'ai pris la d\u00e9cision, \u00e0 la m\u00e9moire de Dylan, de faire ce que je pourrais en tant que d\u00e9put\u00e9 pour mettre en place, avec l'aide du gouvernement, une solution efficace \u00e0 ces probl\u00e8mes.

"}, "url": "/debates/2008/4/14/don-bell-2/", "politician_url": "/politicians/22/", "politician_membership_url": "/politicians/memberships/1281/", "procedural": false, "source_id": "2416944", "h1": {"en": "Private Members' Business", "fr": ""}, "h2": {"en": "Treatment of Rare Disorders", "fr": ""}, "document_url": "/debates/2008/4/14/", "related": {"document_speeches_url": "/speeches/?document=%2Fdebates%2F2008%2F4%2F14%2F"}}