A Red Deer mother decided to celebrate what would have been her son’s 28th birthday by asking community members to swab their cheeks as newly registered stem cell donors.
Jan Hurlburt has been coping with the death of her son Josh, who died in April shortly after two separate stem cell transplants failed to cure the chronic granulomatous disease he was diagnosed with at birth.
His upcoming birthday on Dec. 1, however, inspired Hurlburt to help find a donor for a young Alberta boy battling the same rare blood disease that disables patients’ cells from fighting off bacterial and fungal infections.
“It’s the most horrendous thing that anyone can go through,” she said of losing a child while at the OneMatch Stem Cell and Marrow Network clinic held at CrossRoads Church Tuesday.
Hurlburt’s greatest hope is that the event — which saw upwards of 60 eligible individuals sign up as potential stem cell donors — will locate a donor match for seven-year-old Calgarian Noel Young.
Noel’s mother, Anne Robillard, reached out to Hurlburt when she learned through friends that there was another Albertan fighting the life-threatening disease. Only four in one million are diagnosed with CGD.
Hurlburt said Robillard came with lemon pies and high spirits when she visited Josh’s hospital room at Foothills Hospital in Calgary following his transplant surgeries.
The two say they formed an instant bond and could be seen chatting, smiling and hugging at the clinic on Tuesday.
“Having someone that has walked the same path as you is really great,” Robillard said. “To know that you’re not alone and that somebody can completely understand.”
She added that Josh’s death also hit her hard.
“It made me really scared to know that’s what my son could be in for as well. It really hit home.”
Robillard said that stem cell transplant surgery is the only treatment option left for her son.
Noel is currently tended to by seven different physicians, takes antibiotics and antifungals daily, goes to the hospital for check ups and emergency situations every month, and had his colon removed in April after the organ became infected.
No one in his family is a stem cell donor match.
It’s an all too similar case said Cassandra DeLuca, co-ordinator of donor management for OneMatch Stem Cell and Marrow Network, a Canadian Blood Services program.
“Thirty per of times you’ll find a match within your own family,” she said.
“Seventy per cent times you’ll find a match with an unrelated person. Which is why it’s so important for every person who is eligible to sign up on the registry.”
There are approximately 800 Canadians, including 55 in Alberta, currently seeking matches from an unrelated stem cell donor.
Those who attended the clinic on Tuesday registered as a potential donor and then had a buccal (cheek) swab. All of the DNA collected will be taken back to the lab in Ottawa for testing and the registrants will be entered into a database.
So far, just over 260,000 Canadians have signed up as stem cell donors.
DeLuca said 80 per cent of the registrants called on to make a stem cell donation will do so through peripheral blood stem cells, which is a similar process to a blood donation.
The other 20 per cent will have to undergo a bone marrow aspiration usually taken from the back hip bone while under a local anesthetic.
She added that anyone interested in signing up as a donor can do so by registering online at www.onematch.ca. A buccal swab kit will be mailed out to those who sign up.
Eligible donors must be between the ages of 17- and 50-years-old, in good health and willing to donate to anyone in need.
“It’s really, I think, one of the best gifts you could give somebody in life,” Robillard said. “To give them the chance to live.”
ptrotter@www.reddeeradvocate.com