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l a n o i Reg VOLUME 13 NUMBER 43
FRIDAY, OCTOBER 23, 2015
Stettler youth raising money to help others suffering from deadly blood disorder STACEY LAVALLIE WEEKENDER REPORTER A common medical procedure at the tender age of two weeks nearly cost Stettler’s Maison Ruby his life. Now, he and his family is hoping to educate and raise awareness about a rare disease as well as raise funds for research and a youth camp for kids with hemophelia. Maison is a hemopheliac, which means a rare genetic mutation has caused his blood to not have a certain protein, “Factor VIII”, in it that causes clotting. Without that protein, a simple bruise can cause Maison to bleed to death. Maison is a Type A hemopheliac. Type B hemopheliacs are missing Factor IX. The very rare Type C hemopheliac is missing Factor XI. “What would be a simple bump on our head could be fatal for him,” Tanya Ruby, Maison’s step-mother, said. While Maison doesn’t bleed any more than any other person, he bleeds for longer since his clotting takes a longer time. Medicine has come a long way since the days of Russian Tsar Nicholas II, whose son Alexei was a Type B hemopheliac. His disease, and his parents’ desperation to save their only son, led to the closeness of the infamous Grigori Rasputin to the Russian Royal Family. Alexei died with the rest of his family during the Bolshevik uprising. Back then, the royal family turned to Rasputin’s re-
puted mysticism to save Alexei’s life, which was fraught with troubles from his uncontrolled bleeding. Today, hemopheliacs like Maison have Factor VIII, a powdered substance separated from blood donations and provided to hemopheliacs. “It’s in a powder form and we have to mix it with saline,” Tanya Ruby explained. “Then it’s infused through an IV.” The 10-year-old has a very rare, serious form of hemophelia. Less than one per cent of hemopheliacs have this form, the most serious, and Maison has the dubious honour of being amongst them, his stepmother noted. “It means he has at least three home infusions weekly,” she said. “Just to function normally. If he has a bleed, it can be twice a day, or a hospitalization.” Like many hemopheliacs, Maison is at danger of bleeding to death from minor cuts and bruises. However, his joints are also in particular danger, as a bleed in the joint can seriously damage the joint, causing arthritis or loss of function. “He’s already having problems with his knees,” Tanya Ruby said. “He’s had a few joint bleeds there.” With the danger a mere bruise presents in Maison’s life, his activities are pretty curtailed. There’s no hockey for Maison, or baseball. He can’t jump on a trampoline, he’ll never be able to go on a dirt bike or a quad. “It’s really frustrating,”
Contributed photo
Maison Ruby, 10, was diagnosed with a blood disorder called hemophelia, which means his blood doesn’t clot and a simple bruise or cut can cause him to bleed to death. He’s raising money for research, the Canadian Hemophelia Society, and Camp Kindle with his Bowl for Blood on Oct. 28. Tanya Ruby noted. “He really chafes at not being able to do more, especially in sports.” Tanya and TJ, Maison’s father, as well as his mother Allison Baker in Red Deer, do everything they can to give Maison as normal a life as possible. And, as time goes on, all the extra steps they need to make have become everyday. “My family is in Saskatchewan,” Tanya Ruby said. “If we go on a trip, we have to order Factor VIII ahead, contact
the hospital near where we’re going, and send it there so they have a supply on hand. We can’t just bring it with us, in case there’s an accident.” Since Factor VIII is a blood product, it’s not something the family can just pick up at a pharmacy. Orders have to go through the Canadian Hemopheliac Society (CHS). Hospitals don’t just order it in because the family calls ahead — all that ends up on their plate. Maison is in the final stages of setting up his
Make-A-Wish wish. That, too, will require all sorts of extra steps. Despite the pain, danger and frustration of his disease, Maison and his family wanted to help others who are in a similar situation. For that reason, they’re hosting an event, Bowl for Blood, at Heartland Bowl on Oct. 28. Students from Christ-King School have been given pledge forms and are raising money for the event. The money is being split three ways — one third
will go to Alberta’s branch of CHS, a third will go to research, and a third will go to Camp Kindle. The week-long camp for hemopheliac children costs about $1,000, which is paid by CHS. There, kids have a chance to take part in activities and be with others with similar versions of the blood-disease. They’re also taught by nurses how to self-administer the important Factor 8, which helps their blood clot. “Camp Kindle means a lot of Maison,” Tanya Ruby noted. “He looks forward to it every summer.” “Everything we do is planned around his disease,” she said, taking a moment to praise his teachers and Christ-King School, where Maison is a student. Teachers there have a phone app that helps them recognize the sorts of bruises Maison may show, and what to do — does the bruise mean call a parent or call an ambulance? “He’s really thriving there,” she said. “He wouldn’t have that in a big city school.” Hemophelia in women is very rare, with the disease almost only appearing in men. The mutation happens in the X chromosome, so both a woman’s mother and father must have the mutated gene in order for a woman to suffer from the disease. With only one x-chromosome, a male with the mutated chromosome is almost guaranteed to have the disease manifest.