4-year-old Montreal girl desperately needs life-saving stem cell donation - Action News
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Montreal

4-year-old Montreal girl desperately needs life-saving stem cell donation

In a few weeks, Minh Nguyen went from being a healthy child to being in and out of hospital, suffering from a rare blood disease. She needs a stem cell donation but because she is of Vietnamese and Caucasian heritage, it's hard to get a match.

'Preparing for the worst, hoping for the best': Mother hopes Asian, mixed race donors step up

A little girl wearing a bright pink coat smiles and holds up a small rock.
Minh Nguyen, 4, has Medullary Aplasia and is waiting for a compatible stem cell donor. (Submitted by Diem Nguyen)

Two months ago, Diem Nguyen says her 4-year-old daughter Minh was a healthy little girl, attending daycare, practisinggymnastics and playingin the park.

But it all changed in the beginning of June, when Nguyen, a single mother, says she first noticed bruises on Minh's legs and small red dots under her skin.

Just a week later, after multiple tests at Montreal's Sainte-Justine children's hospital, Nguyen gotthenews that Minh had Medullary Aplasia a rare blood disease that stops the production of red blood cells, white blood cells and platelets.

Within weeks, Nguyen watchedher only child receiving multipleblood transfusions and being repeatedlyhospitalizedeven marking her fourth birthday at Sainte-Justine's.

"She has at least three transfusions every week for her platelets, for her blood. Her white blood count is zero right now. She's not protecting herself against infection," said Nguyen.

"It's a constant of going to the hospital, (getting a) transfusion until we can get the cure . Two months ago she's a perfectly healthy child and I cannot tell you how it has affected us."

The search for the perfect donor

Although the cure for Minh's condition is relatively straightforward receiving a stem cell transplant from a compatible donor finding a match for Minh has been difficult because she is half Caucasian, half Vietnamese.

Around 70 per cent of donors on the international registry are Caucasian, Nguyen says. Considering that donors need to have the same ethnic background as the stem cell recipient, Nguyen says Minh's chances of a match are slim, or "one in one million."

"There's not a lot of Asian (donors), there's not a lot of mixed ethnicity," said Nguyen. "So we're preparing for the worst, but we are hoping for the best."

A small woman with a bald head stands behind a table. Facing her is a wall of TV cameras and journalists.
Mai Duong, co-founder of Swab The World, went to the media for help when she sought a stem cell donor in 2014. (Swab The World)

Mai Duong, co-founder of Swab The World, an organization committed to boosting ethnic diversity in the worldwide stem cell donor base, experienced the same challenge when she had a relapse of leukemia in 2014.

As someone with Vietnamese heritage, Duong says out of the 25 million donors that were listed on the international donor bank in 2014, no one was compatible enough to be her donor.

"Minh's case, it's the same story as mine. By default, BIPOC(Black, Indigenous and people of colour) communities don't have the fair chancewe don't have that representation on the stem cell registries all around the world," said Duong.

Duong heard about Minh's situation when she came across one of Nguyen's Facebook posts that garnered hundreds of comments and thousands of shares. She says it reminded her of her own public campaign to find a donor in 2014.

"It's bringing me back to the state of how difficult it is, and how the general public want(s) to help but they don't know anything about it. It's so unfortunate," said Duong.

Nguyen notes that the longer they wait for a stem cell donor for Minh, the greater the risk of infection. In the event that they cannot find a match, Nguyen says the doctors will try all other options treatments thatcouldleaveMinh susceptible to deadly viruses and infections.

A little girl waves with her right hand. Her left arm is hooked up to a machine in a hospital setting.
Minh Nguyen gets a transfusion at Sainte-Justine children's hospital. (Submitted by Diem Nguyen)

"They don't want to tell me the risk of survival because they're waiting for the stem cell (donation)," said Nguyen. "But they tell me that the next year will be hard."

Nguyen says Minh has adjusted relatively well to all of the changes that have happened since her diagnosis.

"She's much stronger than me in terms of resilience . For her she doesn't really understand why she cannot go to the park, why she cannot see friends because she gets sick really easily (and) has no immune defence," said Nguyen, who noted that Minh washospitalized June 27, for the third time this month.

"But she's a happy child. When she sees mom crying, she said 'I'm here for you,'" said Nguyen, her voice shaky, on the verge of tears.

Every donor registration brings hope

Nguyen says it's been a heartbreaking few weeks but, she has found comfort in all the support from the public.

"People are extremely generous A lot of people have been telling me that they just registered themselves," said Nguyen.

"For me, every person that registers, it's like a hope If it doesn't help Minh in my heart (I hope) that it might help another child."

In the coming weeks Duong says Swab The World is planning a big push to help Minh, with the release of a videoand billboard campaign in Montreal, Toronto and Vancouver.

This includes sharing information about the process of becoming a donor and registering through Hma-Quebec.

"Right now Minh is the poster child for this, the stem cell registry and the lack of diversity. But she is the poster child to many, many, many patients that don't have a match," said Duong.

"So when you're registering for Minh, you have also to keep in mind that you might not be a match for her, but you could be a match for somebody else."