More diverse stem cell donors needed as Tecumseh 9-year-old awaits match

For years, Zoe Dudzianiec and her family have traveled up Highway 401 to SickKids Hospital in Toronto from Tecumseh every 10 days for the transfusion she desperately needs.

Dudzianiec, 9, has a rare type of anemia called diamond blackfan anemia: Her body produces no red blood cells. It's a condition found in just one per cent of the population. 

He best long-term treatment is a stem cell transplant. But it's been nine years of waiting and still, no match has materialized, her mom says. They've been throwing their effort into raising awareness about stem cell donation, holding swabbing and registration events to hopefully find a match. 

"It's frustrating, but you have to think of some positives with it as well," said Heidi Dudzianiec. "By doing all of these bone marrow drives and swab events and searching them, for sure we've helped over the years, many other people who also need it."

There is a "Get Swabbed" event to identify potential donors on Thursday, Nov. 23, from 9 a.m. to 2 p.m. in the University of Windsor's CAW Student Centre Commons.

Zoe is an active and lively child who speaks French fluently and loves to play the piano. But to thrive the way she does, until she gets a stem cell transplant, she receives a transfusion — essentially living on donor blood, her mom says. She was diagnosed as a baby after a week in the neonatal intensive care unit. 

The family has Middle Eastern roots, Dudzianiec says, which makes it more difficult to find a compatible match for Zoe.

According to the Canadian Blood Services (the stem cell organization in Canada) the most likely matches in donations like these come from people of the same ethnicity. 

Dudzianiec says they hold "swab events" where people can register in person to be in the stem cell donor registry.

"Everything you can think of to try to get more of the public out there, to get swabbed, to find out if they are a match," she said. "It's very frustrating, but you can either go down the rabbit hole or think positive and keep moving."

It's not just in Canada the family is searching for a match: the Canadian stem cell donor registry is linked with similar registries internationally, 39 million potential donors. None has yet been a match for Zoe. 

If Zoe ever finds a match, she'll go to SickKids for the procedure, which involves chemotherapy and a long recovery. But hopefully, with the transplanted stem cells, her body would then start making the red blood cells she needs. 

Experts say Zoe isn't alone in facing the struggle to find a match. 

Of the 450,000 registered potential stem cell donors in Canada, about 66 per cent are white, said Chris Van Doorn, the community development manager of stem cells with Canadian Blood Services.