In 2008, Noel Young was diagnosed with Chronic Granulamatous Disease (CGD).
The seven-year-old boy from Calgary is one of 55 Albertans with the rare condition, described as a genetic blood disease that is life threatening.
During a recent treatment of the disease in Indianapolis, doctors verified Noel has a new genetic form of CGD, the first such case ever to be diagnosed. The family is in need of a bone marrow donor for their son.
In the meantime the family has hosted donor registration events like the one that took place Tuesday with OneMatch at CrossRoads Church in Red Deer.
“I’m hopeful with every event, that every person who signs up, a match could be a possibility,” says Anne Robillard, Noel’s mother.
Tuesday’s event was held in honour of Joshua Hurlburt, who died last spring due to complications while undergoing a bone marrow transplant to treat CGD. The young man, a graduate of the Red Deer College Motion Picture Arts Program and who had worked as a missionary in Morocco, is remembered by friends and family as a passionate person who lived life to the full and did not dwell on the disease. The disease he shared in common with Noel brought the two families together though they were strangers at the time.
The families have found mutual comfort in each other. “It’s hard to see this disease repeat itself,” says Jan Hurlburt, Joshua’s mother.
“It’s a disgusting disease that takes so much from you. We’re just trying to raise awareness for the need of bone marrow donations from people.”
CGD has rendered Noel’s immune system unable to fight infection and makes it difficult for his body to heal. As a result, he has lived with open wounds for the last few years.
The disease has taken a particular toll on his gastrointestinal system. Noel had an extensive surgery in April to remove his colon. Despite his hardship, “Noel is a happy, loving, social boy who loves life,” says Anne.
Beyond the major surgery, daily medication and injections, Noel has been admitted to the hospital 10 or 11 times. “I’ve started to lose count,” admits Anne. “He now needs a bone marrow transplant.”
Bone marrow produces new blood cells critical in helping the body fight disease. With no match in the family, the Robillards are dependent on a donor for the transplant.
“Our goal is to help find a compatible unrelated stem cell donor for Noel and 800 other Canadian patients in need of a match,” says Sue Smith, Executive Director of Canadian Blood Services’ OneMatch Stem Cell and Marrow Network.
“Time is precious when searching for a match.” The need, Smith says, for donors in Canada for people like Noel is immediate.
A search for a donor with the same tissue type as Noel was conducted in 2008. Among the 260,000 Canadians in the Stem Cell and Marrow Network registry, 32,000 of them Albertans, no match was found. Nor were there any successful candidates among the 64 countries worldwide that share information in the international registry.
The Hurlburt family helped to organize Tuesday’s event, assembling the 20 volunteers required to register prospective donors.
Potential donors go through a 10 to 20 minute registration process, as they did at Tuesday’s event, and can set up appointments online or over the phone.
“It is so easy to register,” says Smith. During the process, the inside of the cheek is swabbed. Cheek cells are collected as tissue samples and the potential donor’s information is entered into the OneMatch database, where it is kept on file until a donor reaches the age of 60.
So far, “there’s no match for Noel in the whole world” notes Hurlburt, who is hopeful registration events will produce a successful donor for the boy. The simple process led to 300 successful transplants in Canada last year alone.
“I’m hoping people can consider giving the gift of life by signing up [with] OneMatch,” says Anne, who emphasizes that if Tuesday’s event helps anyone who needs a bone marrow transplant find a match, the event will be a success.
Donors must be 17-50 years old, in good health and willing to donate to anyone in need. Potential donors who missed Tuesday’s walk-in event at CrossRoads Church can begin the registration process online at any time by visiting www.onematch.ca or by calling 1-888-2-DONATE.