WATCH: An 11-year-old girl with a rare blood disease is in need of a stem cell transplant ideally from a match within the South Asian Community. Angie Seth reports.
Stem cell and bone marrow donations are critical for hundreds of people in Canada suffering from certain types of cancers or blood diseases.
Right now there are approximately 800 people on the transplant list. Among them is 11-year-old Cierra Singh.
Cierra has a rare blood disease called Myelodysplastic Syndrome.
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“My bone marrow and my bones are not producing enough healthy cells. So there are platelets and the white blood cells and the red blood cells. My mom tells me they are not working as well as they should work,” Cierra tells Global News.
We had the opportunity to meet this incredible little girl who strives to give back to others in every which way.
“Everyone says it’s a big deal, but I don’t see it as a big deal. I just try to stay positive all the time,” she says.
Cierra was diagnosed with the rare blood disease in April. A trip to Sick Kids hospital because of a swollen leg led doctors to discover Cierra’s immune system was not functioning properly.
Her Mother’s fears paint a bleak picture.
“If she were to get a fever of 38.5 and up we need to rush her into emergency within the hour …. The risk of infectious diseases is very high so they need to pump her body with antibiotics because she won’t be able to fight it. The only cure for Myelodysplastic Syndrome is a stem cell transplant, there is no other option,” Kiran Benet, Cierra’s Mom says.
Cierra’s situation goes beyond a rare blood disease. She is of South Asian descent and so her DNA is very diverse specifically her Human Leukocyte Antigens or HLAs.
HLAs are sets of markers found on most cells in the body. When someone needs a stem cell or bone marrow transplant the best donors are those that can match up with those markers specific to the individual in need. For those from an ethnic background the HLAs are more complex so a match from someone from the same ethnic background is ideal.
In Cierra’s case, a South Asian male between the ages of 17-35 is the best match. But the minority representation within the donor database is very small.
Minority groups make up only one-third of the donor population in Canada – South Asians make up only 3.6%. One Match has been working over the years to meet the needs of Canada’s diverse population.
“Some of these antigens are common in one community and non-exist in another. What patients need is a database reflective of the diversity of Canada,” MaryLynn Pride from One Match tells Global News.
Pride says more needs to be done to mobilize ethnic communities to donate.
“Whether it’s through a one match donor, registering and donating blood, or registering, donating blood and becoming an advocate to the community to donate and register,” Pride says.
Heeding that call are groups like South Asians For Life who are working directly in the community by educating people about stem cell and bone marrow donation, the process, talking to the media, hosting swab events, and breaking down the stigmas attached with stem cell and bone marrow donation and transplantation.
“If you are a member of one of these groups then your chances of finding a donor are quite small. It also means if you are a member of one of these groups and you have not signed up for the registry, you are not doing your part to help others you can easily be helping,” Soumo Mukherjee from South Asians For Life tells Global News.
In addition to stem cell and bone marrow donation there is also a big push for communities to participate in cord blood collection and storage as it presents another option for optimal donors. “Umbilical cord is a rich source of stem cells and can for some patients be an option,” MaryLynn Pride tells Global News.
Canada currently has a National Public cord blood bank with offices in both Ottawa and Brampton. Collection and storage facilities will be opening up in Edmonton and Vancouver later this year.
Back to 11-year-old Cierra, the campaign to find her a match is going strong with both a Facebook page and twitter account @stemcell4cierra.
This remarkable young girl left quite an impression during our interview with her – downplaying her illness but pushing for others to donate with intelligence and spunk.
“I want to encourage people, if you are in the range of 17-35, to get swabbed so they can be on the registry and help me or another person that needs a bone marrow transplant. If you have lots of people who care about you, it’s hard to be scared or worried,” she says with a smile.