In an effort to help save the life of a young Calgary boy, the Okotoks Junior A Oilers are teaming up with a local woman in the search for a stem cell match.
Noel Young, 7, has a rare condition called chronic granulomatous disease. He is the only person in the world to be diagnosed with this form of the disease, and the only cure is a stem cell transplant, said his mother Anne Robillard.
The life-threatening illness prevents Noel’s immune system from being able to fight off infections, Robillard explained. The cure is a transplant of stem cells, which are found in bone marrow.
To help in the search for a match, Okotoks resident Laura Bishop, a friend to Noel and his mother, is hosting a stem cell drive and buccal cheek swab event in partnership with Canadian Blood Services’ OneMatch Stem Cell and Marrow Network and the Okotoks Oilers.
Bishop felt the desire to help Noel because of her own experience having a child diagnosed with leukemia. Her son Graydon, 9, was once a student at Jamie’s Pre-School in Calgary, a pre-school for children with cancer and fragile immune systems, where they met Noel and his mother.
The event, to be held on March 5 at the Centennial Arena from 5:30 p.m. to 9 p.m., coincides with the Oilers’ first playoff game, starting at 7 p.m., which Bishop is hoping will help to draw a strong crowd to the event.
The Okotoks Oilers have donated space in the lobby area of the Centennial Arena where the stem cell drive will be held, Bishop said.
“We’re so appreciative of their help,” said Bishop.
Dallas Hand, marketing manager for the Okotoks Oilers, said the team is excited to help in the search for a cure.
“Our attendance tends to spike in the playoffs, so being able to support a cause like this is something we are fortunate to be a part of,” Hand said.
The province-wide search for a stem cell match for Noel has been ongoing for several months. Similar events have already been held in Calgary, Red Deer and Edmonton, but a match has yet to be found.
Comparing the experience to “searching for a needle in a haystack,” Robillard said finding a perfect match hasn’t been easy. Noel needs an exact 10 out of 10 genetic match, or at least a specific type of nine out of 10 match, for the transplant to be successful, she said.
Although the chances of finding a match at the Okotoks event are “slim,” as described by Cassandra De Luca, donor management coordinator with OneMatch Stem Cell and Marrow Network, she said it is still important for as many people to take part as possible. Those who are registered with OneMatch are put on a global registry and could be matched with another patient in need of a stem cell transplant anywhere in the world.
“You could be a match for somebody else. Regardless, you are going to save a life if you become a donor,” De Luca said. “It’s an amazing miracle to be a part of.”
De Luca explained the registration process is “very simple.”
“It just takes 20 minutes to sit down and go through the registration, and then to do the swab,” she said, which simply involves swiping the inside of your cheek with a cotton swab. Those interested in attending the March 5 stem cell drive must bring their health cards.
If someone is found to be a match for Noel or another person in need of a stem cell transplant, there are two ways in which stem cells could be taken, De Luca said.
Eighty per cent of cases are done through peripheral blood stem cell collection, a process similar to donating blood where stem cells are separated from the rest of the blood and the blood is then returned to the donor, De Luca said.
The other 20 per cent of cases are carried through aspiration of bone marrow from the back of the hip, she said. Patients undergo anesthesia during this procedure and could experience some discomfort afterwards as if they “slipped and fell on some ice,” De Luca explained.
Both procedures come with certain risks and side effects, which are outlined on the www.onematch.ca website.
As registering with OneMatch could lead to undergoing either of these procedures, De Luca said it is important for people to consider the implications of becoming a stem cell donor.
“People need to make an informed decision as this does represent a long-term commitment to the cause,” she said. “It could be years before you are ever called and matched with a patient.”
Robillard said she urges people to go online to register themselves on the bone marrow registry. Noel is currently just one of more than 800 Canadians in need of a stem cell transplant.
“The more people that are on there the better,” she said. “It helps not only Noel but lots of other people worldwide that depend on this to live.”
Bishop said she hopes Okotoks residents come out and take part in the search.
“You could save a life,” she said. “And it’s such an easy way to contribute too. It’s so simple … We’re not asking for money, we’re just asking people to come out and give some of their DNA.”
It has taken more than two months to organize the event, which Bishop said she found frustrating at first given the urgency of the situation.
However, as coordinator for all stem cell searches for Manitoba, Saskatchewan, Alberta and British Columbia, De Luca said there are many events that need to be planned across the four provinces.
“Events take six to eight weeks to plan, and are then contingent on the schedule of the coordinator,” she said. “We do our best to ensure that we give people the best level of service we can.”
De Luca added those unable to attend the Okotoks event always have the option of registering themselves online at www.onematch.ca. Cheek swab kits can also be sent to potential registrants through calling 1-888-2-DONATE.
Donors must be 17 to 50 years old, in general good health and willing to donate to anyone in need around the world.
