Mononcle Stéphane, est un super héro comme moi! Et oui, je vous l’assure, il a des gilets de Batman, de captain America et son chien, c’est un capitaine! Il a aussi à ses côtés la meilleure femme, comme tous les super héros dans les films. S’il est dans la pièce, ça sert à rien d’essayer d’avoir mon attention, il n’existe personne de plus intéressant que lui à mes yeux. Mononcle Stéphane, m’aime beaucoup et aussitôt qu’il a su que j’étais malade, il a voulu s’impliquer et faire tout son possible pour m’aider. Il a contacter la société canadienne du sang et univie pour obtenir plus d’information sur le don de moelle et pour voir comment il pouvait s’impliquer. Plusieurs d’entre vous nous avez demandé dès le début de ce périple s’il était possible de se faire « tester » pour être donneur pour moi. À présent, on m’a trouvé un donneur, mais plusieurs enfants et adultes ne sont pas aussi chanceux que moi. Je vais souffrir beaucoup avant de guérir, et j’aimerais bien que tout ce que je vis puisse aider aux autres. Alors bien que si vous ajoutez votre nom sur le registre de moelle, ça ne pourra pas m’aider directement, si vous le faites en mon honneur, ça m’aiderait à aider aux autres. Mononcle Stéphane a écrit une note que je vais ajouter à la version anglaise pour vous expliquer le processus.
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My uncle Steph is a super hero just like me! I swear it’s true. He has Batman and Captain America shirts and his dog is a Captain! He also has the best lady like in the movies! When he’s in the room, no need to waste your time trying to get my attention, all eyes are for him. He loves me very much and as soon as he found out I was sick, he wanted to help and found a way to get invovlved with OneMatch. Since the journey started, many of you have asked is there’s any way to get tested to see if you are a match for me. As you know, They have found a match for me, but many children and adults aren’t as lucky as I am. I will go through a lot before getting better and I would really like it if I could help others in the process. So although you can’t directly help me by addind you name to the registry, if my story has encouraged you to do it, then you’re helping me help others. Here’s a letter uncle Steph wrote to help convince you!
On August 30th me, JM and the rest of our softball team we’re playing for the year end championship. It was raining, it sucked but we came through and won the game. We we’re meeting after a shower to celebrate our win, I couldn’t have been more wrong. By the time we got to the restaurant Mel and JM got news on Isabelle health that would change everything. At first I probably had the same reaction as everybody else, “What the heck is Osteopetrosis?” Without asking Mel and JM to many questions, because the news was fairly recent for them as well, I got to understand that the only possible cure was a Bone Marrow Transplant (BMT) from a compatible living donor or from a cord blood bank. Then I got the second reaction that almost everybody got, “Where can I get tested? I want to see if I’m a match for Isabelle.”
After doing some research I realized that the odds of me and Isabelle being a match are very small. Since I’m an occasional blood donor my research directed me towards the Canadian Blood Services, I was thinking if anyone has some sort of BM donor registry it had to be them, and this is when I found OneMatch. Wanting more information I got in contact with them to see if there is anything I could do to promote their registry, to learn more about their work and any information regarding the BMT process altogether. I got in touch with Jessica from OneMatch and she told me about what they do, who is a good donor and gave me a lot of information regarding the registry.
Who is OneWatch and what do they do?
In 1989 the Unrelated Bone Marrow Donor Registry (UBMDR) was created with the goal of recruiting and locating compatible, committed, healthy, unrelated donors for patients in Canada (and around the world) who required a BMT. In 1998 the Canadian Blood Services was transferred the responsibility of the UBMDR and in 2007 changed their name to OneMatch. As well as being responsible for updating and maintaining the registry OneMatch is also responsible for recruiting new potential donors. They reach out by going to blood clinic and are trying to be a bigger presence in High School and University to promote awareness.
So who’s a good match?
To join the OneMatch Stem Cell and Marrow network, you need to be between the age of 17 and 35 and meet certain health criteria which include a certain height/weight levels. Men are a better donors than Women because their Bone Marrow has less tendencies to be rejected by the patient. By any means this is not to be interpreted in a way that Women shouldn’t join the registry, a match is a match, anyone can save a life.
Since the registry has been around since 1989 there are enough people on it already, right?
This couldn’t be further from the truth. If you think about it, is this the first time you hear about OneMatch? Are you on the registry? I have to admit I wasn’t until a few weeks ago after I found out about Isabelle’s condition. At first I was incredibly ashamed of not being on the registry but I then realized that nobody ever asked me. So now I’m asking you, on behalf of Isabelle, would you please consider joining the OneMatch Stem Cell and Marrow network? Currently in Canada there is 330 000 people on the Stem Cell and Marrow Network, of which 66% are women over 35. According to StatsCan from their last Census in 2012 they are about 7 300 000 Canadians between the age of 20 to 34, this registry definitely can and could use a boost.
Why should I join?
When a patient requires a BMT less than 25% of patients will have a sibling that is a match. In other words more than 75% of patients requiring a BMT will have to rely on an unrelated donor, you can be that donor. For people close to Mel and JM it’s the reason of joining is easy they want to save Isabelle. But it’s even simpler than that, they want to save a life. The chances are that I won’t be a match for Isabelle but that doesn’t mean I won’t be a match for someone else. When joining the registry a potential donor needs to understand that it’s a commitment, you can’t join OneMatch just to see if you are a match for your sick friend or relative, you join OneMatch because with every new potential donor the registry gets, the more hope a patient gets. I had a conversation with my friend over the week-end that pretty much sums up what the perfect potential donor can be:
Me: Well Adam, if you are a match for Isabelle would you give some Bone Marrow?
Adam: Of course!
Me: Let’s say you’re not a match for Isabelle but for someone else you don’t even know, would you still do it?
Adam: Of course, no question! Where do I sign!
Adam was overly enthusiastic; yet again his life motto is “If something’s worth doing, it’s worth overdoing”. So if you are like my overly enthusiastic friend and understand why it’s important to join OneMatch please look at the following link and consider registering.
Also if you have any questions please e-mail me personally (stephane.goyer@gmail.com) and I will do my best to provide you with answers. If I don’t have the answer I’ll go see my friends at OneMatch and I’m sure they will provide us with answers.
Le geste de Stéphane est super… quand je pense à tous ceux qui ont besoins de transplantation…pas seulement Isabelle. J’encourage tous ceux admissible à le suivre..