Two months ago, Diem Nguyen said her 4-year-old daughter Min was a healthy little girl, attending kindergartens, practicing gymnastics and playing in the park.
But all that changed in early June, when Nguyen, a single mother, said she first noticed bruises on Min’s legs and small red spots under her skin.
Just a week later, after numerous tests at Sainte-Justine Children’s Hospital in Montreal, Nguyen received the news that Min had medullary aplasia, a rare blood disorder that stops the production of red blood cells, white blood cells and platelets.
Within weeks, Nguyen watched his only child receive multiple blood transfusions and was repeatedly hospitalized – even celebrating his fourth birthday at Sainte-Justine’s.
“She does at least three transfusions every week for her platelets, for her blood. Her white blood count is zero at the moment. She is not protected from infection,” Nguyen said.
“It’s a constant going to the hospital, (getting) a blood transfusion until we can heal… Two months ago she was a completely healthy child and I can’t tell you how that affected us.”
The search for the perfect donor
Although treating Min’s condition is relatively easy – getting a stem cell transplant from a compatible donor – finding a match for Min was difficult because she is half Caucasian, half Vietnamese.
About 70 percent of the donors in the international registry are Caucasian, Nguyen said. Given that donors must have the same ethnic background as the recipient of stem cells, Nguyen says Ming’s chances of a match are slim or “one in a million.”
“There are not many Asians (donors), there is not much mixed ethnicity,” Nguyen said. “So we prepare for the worst, but we hope for the best.”
Mai Duong, co-founder of Swab The World, turned to the media for help when looking for a stem cell donor in 2014 (Swab The World)
Mai Duong, co-founder of Swab The World, an organization committed to promoting ethnic diversity at the world’s stem cell donor base, experienced the same challenge when it had a leukemia recurrence in 2014.
As a person with a Vietnamese heritage, Duong says of the 25 million donors listed on the international donor bank in 2014, no one was compatible enough to be a donor.
“The case of Min is the same story as mine. “By default, BIPOC communities (blacks, locals and people of color) don’t have a fair chance – we don’t have that representation in stem cell registries around the world,” Duong said.
Duong heard about Ming’s situation when he came across one of Nguyen’s Facebook posts, which garnered hundreds of comments and thousands of shares. She says it reminds her of her own public campaign to find a donor in 2014.
“It brings me back to the state of how difficult it is and how the general public wants to help, but knows nothing about it. It’s so unfortunate, “Duong said.
Nguyen notes that the longer they wait for a stem cell donor for Min, the greater the risk of infection. In case they can’t find a match, Nguyen says doctors will try all other options – treatments that can make Min susceptible to deadly viruses and infections.
Min Nguyen received a blood transfusion at Sainte-Justine Children’s Hospital. (Submitted by Diem Nguyen)
“They don’t want to tell me the risk of survival because they are waiting for the stem cells (donation),” Nguyen said. “But I’m told next year will be tough.”
Nguyen says Min has adapted relatively well to any changes since her diagnosis.
“She’s much stronger than me in terms of endurance … She really doesn’t understand why she can’t walk in the park, why she can’t see friends … because she gets sick very easily. there is no immune defense, “said Nguyen, who noted that Min was hospitalized on June 27, for the third time this month.
“But she is a happy child. When she saw Mom crying, she said, “I’m here for you,” Nguyen said in a trembling voice, on the verge of tears.
Every donor registration brings hope
Nguyen says they have been heartbreaking for several weeks, but she has found solace in all the public support.
“People are extremely generous… Many people have told me that they have just registered,” Nguyen said.
“To me, anyone who registers is like hope … If it doesn’t help Min in my heart (I hope) it can help another child.”
In the weeks that followed, Duong said Swab The World was planning a big push to help Min, with a video and advertising campaign in Montreal, Toronto and Vancouver.
This includes sharing information about the donor process and registering through Hema-Quebec.
“Right now, Min is the poster child about this, the stem cell registry and the lack of diversity. But she is the child of many, many, many patients who don’t match,” Duong said.
“So when you sign up for Minh, you also have to keep in mind that you may not meet it, but you could match someone else.”
Add Comment