Edmonton family hosts swab event in Calgary to find potential stem cell donor of Asian descent
Published Wednesday, May 30, 2018 10:05PM MDT
Three Alberta sisters are racing against the clock as they continue their effort to find a stem cell donor for their 25-year-old brother who remains in quarantine and, according to doctors, has only a 10 per cent chance of survival if he does not receive a transplant.
Bille Nguyen was diagnosed with a rare type of blood cancer in January after coming down with a cold and a nagging cough late last year.
“It hit us out of nowhere because he was so healthy prior to,” said Susan Nguyen, Billie’s sister. “We have days where we just sit hopeless in disbelief. It feels like a nightmare.
Bille’s cancer is not being controlled by chemotherapy treatment and his oncologist has recommended a stem cell transplant to replace his malfunctioning immune system.
“My body is really sore and tired all the time,” said Bille, who is currently living in quarantine with his girlfriend in the family’s home in Beaumont near Edmonton. “My joints are feeling really terrible lately. However, I’m not feeling too tired. I still do have energy.”
Bille is currently in his sixth session of chemotherapy and is grateful for the support he's received from his girlfriend, sisters and parents. “They handle every facet of my life so I don’t have to think about these things.”
The effort to find a suitable stem cell donor for Bille has proven difficult due to the fact that the most likely match would be of Vietnamese or Chinese descent but Asians are underrepresented in the national donor registry.
“Canada’s database is comprised of about 68 per cent Caucasian and about 32 per cent from diverse ancestry,” said Sarah Jasmins, Canada Blood Services’ stem cell territory manager for Western Canada. “We need a network that accurately represents Canada’s growing ancestral mosaic.”
“Every community has their specific inherited genetic markers that differentiate them from other ancestral groups. It’s their HLA markers (antigens on blood cells) that they inherit from their parents. Any individual can have difficulties finding a matching donor but particularly Indigenous Canadians, south Asians and African-Canadians face a much steeper hill when trying to find a matching donor.”
Jasmin adds that 25 per cent in need of a stem cell transplant will find a match within their family group but the other 75 per cent will need to find a donor in the database. Bille finds himself amongst the majority.
The Nguyen family says they’re becoming increasing desperate as Bille nears the end of his chemotherapy cycles.
“Once he’s done chemotherapy, the ideal time to get a stem cell transplant is when his cancer’s at its minimum and his organs are at their healthiest,” explained Susan. “If his cancer comes back, that may take us off the list for a stem cell transplant which is what he needs to live.”
“His cancer’s so aggressive. It was growing back between the chemotherapy so we don’t know how much time we have.”
Bille’s three sisters organized a swab event in Edmonton earlier this month in an effort to find a donor for their brother and to help other ethnic minorities in need of stem cell therapy.
“The Edmonton event was amazing” said Susan. “We had 600 registrants come out.”
“I wish I could have been there to shake their hand and just thank them from the bottom of my heart,” added Bille.
The family received messages of support from southern Alberta and requests to host a similar event in Calgary. On Sunday, June 3, the family will host a Match 4 Bille donor drive at the Calgary Vietnamese Canadian Association (1829 54 Street Southeast) between the hours of 8:00 a.m. and 7:00 p.m.
“We’re hoping that Calgary is going to blow that away because there are so much more Asians here and we also had a lot more time to campaign,” said Susan. “We are definitely pushing for Asian background for my brother but we are welcoming any kind of ethnic minority, anyone between the ages of 17 and 35, to come out.”
“It’s really simple to join the registry,” explained Jasmins. “Registrants have to be between 17 and 35, in general good health, willing to help all patients (as) they could be matched to any patient in the world and have valid provincial health care coverage.”
“Joining the registry is as simple as filling out a one page health form and completing a cheek swab.”
For additional information on this weekend’s event visit Match4Bille