Stem cell donors volunteer in hopes of saving Montreal toddler with rare blood disease

For the past seven weeks, four-year-old Minh Nguyen has spent most of her time in hospital, receiving regular blood transfusions because her doctors have not been able to find a compatible stem cell donor. 

Minh was diagnosed with bone marrow aplasia, a rare blood disease that affects her bone marrow's ability to generate white blood cells. She has spent the last three weeks in hospital full-time. 

"It's been hard for her because she doesn't have the life of a four-year-old child anymore," said Minh's mother, Diem Nguyen. 

Nguyen was speaking at an event organized for Minh at a Montreal restaurant Saturday, where dozens of people with similar genetic makeups to Minh showed up to volunteer as potential stem cell donors. 

There is an international registry of 25 million people who have provided consent and genetic information in order to donate stem cells, which come from the bone marrow of a healthy adult.

But about 70 per cent of those on the registry are white, putting donor recipients of from other ethnic backgrounds at a significant disadvantage.

Before Saturday's event, Minh's mother described her daughter's chances as one in a million.

'Finding purpose' in trying to help

Marie-Cindel Surprenant says she felt a personal connection to Minh Nguyen's story when learned about it from a colleague.

"I think that if somehow I can help her, I'll do it, so I think it's a good purpose in my life," she said.

Surprenant is half-Asian, half-white, like Minh.

The toddler's condition can be treated with stem cells from a compatible donor but because of the lack of diversity in the global donor registry, finding a match has been incredibly difficult.

Nguyen said she was moved by the amount of people who came to get swabbed and show their support on Saturday.

"I'm really grateful. These are complete strangers coming to help Minh," she said.

Nguyen said her daughter has shown incredible resilience throughout her time in hospital. 

I said, 'I just want to stay with you as long as I can.' And she said, 'I'm here for you mom, I'm not leaving you.'- Diem Nguyen, Minh's mother

"She's laughing, she's reading, she's playing as much as she can," the mother said. 

Friday evening, Nguyen said she started crying at the thought "that she might not outlive me, in terms of lifespan" and Minh asked her why she was sad.  

"I said, 'No, I'm just having a bit of allergies,' and she said, 'Please, don't say that, mom, I know you're crying.' … I said, 'I just want to stay with you as long as I can.' And she said, 'I'm here for you mom, I'm not leaving you,'" Nguyen recounted.

"She is incredible."

Lack of equity 'unacceptable'

Samuel Sassine, a University of Montreal medical school student who attended Saturday's event, works for a foundation called Swab the World, which was founded by Mai Duong, a woman of Vietnamese descent who also struggled to find a stem cell donor, to encourage people from diverse ethnic backgrounds to become donors. 

Sassine said there is currently no one in the world registered with the same DNA background as Minh. 

"White people have more chances of living through this disease than other people from other ethnic backgrounds and that is unacceptable," he said. 

"In 2022, ethnic non-equity should not exist, and to live or to not live based on your skin colour should not exist either."

Alex Fong, who like Surprenant, came to get swabbed on Saturday to see if he could be a potential donor, said Minh's story had move him. 

"When I found out that not a lot of Asian donors were doing stem cells, I thought it would be a good idea to come and just participate," said Fong.

Sassine says he hopes to see more awareness spread in schools about the of the lack of diversity in stem cell donor registries.

He encourages everyone who is eligible, regardless of ethnicity, to register as a stem cell donor.

In Quebec, stem cell donor registrations are carried out through Héma-Québec. It involves filling in a questionnaire online and then swabbing cells in your mouth with a kit sent by mail. Once you send it back, you can be part of the donor bank, Sassine explained.