'Fantastic' turnout, as Winnipeggers submit samples in stem cell search to help sick teen

A family desperate to save the life of a loved one is hoping someone from Winnipeg's large Filipino community can help them do it.

Best hope for a match is from the city's Filipino community: Canadian Blood Services

Adrienne San Juan is in Winnipeg to help organize a stem cell donor drive that she hopes will find a match for her younger sister. (Walther Bernal/CBC )

A family desperate to save the life of a loved one is hoping someone from Winnipeg's large Filipino community can help them do it. 

Roshlind Mance, 16, has been diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) during the summer,  two rare disorders that affect the blood and could be life-threatening.

Her sister, Adrienne San Juan, along with about 30 family members are holding a stem cell donor drive in Winnipeg in an effort to find a match that could help treat Mance's illness. 

"It's heartbreaking," said San Juan. "Especially being the oldest sister … I feel so helpless that I can't … fix this for her." 

Mance and San Juan live in Calgary, but were born in Winnipeg and have family in the city.

Roshlind Mance, 16, waits in a hospital bed in Calgary. She was diagnosed with a rare and life-threatening combination of blood disorders this summer and is hoping to find a Filipino stem cell donor in Winnipeg. (Submitted by Roshlind Mance)

Mance was enrolled in summer school and on her way to class on July 11 when she felt sick and called her parents.

"She was crying saying that she was in pain," San Juan recalled.

Mance decided to go to school anyway, but when she got there she had a panic attack and her parents rushed her to hospital. After several tests, Mance was diagnosed with aplastic anemia and then PNH a week later. 

San Juan describes her little sister as fun loving, caring and ambitious, but said this fall she wasn't able to enrol in school and only leaves the house twice a week for medical appointments. 

"She's 16 and I was 16 once," San Juan said. "Just seeing her not be able to go through the things a normal teenager would do is just really hard."

Canadian Blood Services is supporting the family's efforts with the stem cell drive this weekend. 

Sarah Jasmins, stem cell territory manager for Western Canada, says that  since Mance is Filipino she would likely find a match in someone with the same background. She says there are currently more than 400,000 people on the CBS stem cell registry, also referred to as OneMatch Stem Cell and Marrow network. However, less than 1 per cent of those potential donors are of Filipino descent.

"We do find that particular ethnic groups have a harder time finding a match, because when you're looking for a match you only find it generally within your own ethnic group," Jasmins said, adding about 69 per cent of registrants on the OneMatch database are Caucasian. 

"Which is great if you're a Caucasian patient, it makes it easier to find a match, but any of our other groups have a much harder time because essentially we are looking for a needle in a haystack and their haystacks are a lot smaller."

Malvin Ison registered as a potential stem cell donor on Saturday morning. (Alana Cole/CBC)

Jasmins is still encouraging healthy people between the ages of 17 and 35 to come to the drive this weekend. She says joining the registry takes about 10 minutes that are needed to fill out a form and swab the four corners of your cheeks. 

"The more people we can get onto the database, the better the hope for patients that are searching right now,"  Jasmins said. 

She says currently there are close to 1,500 people waiting for a stem cell transplant. 

San Juan says her family has already been part of a similar stem cell drive in Edmonton. They chose Winnipeg to hold this event because they have family support in the city, and because of the large Filipino community. 

 "The community is just so tight-knit," San Juan said. 

The stem cell donor drive will run on Nov. 3, 10 a.m.-5 p.m., and Nov. 4, 1 p.m. - 6 p.m. (Walther Bernal/CBC )

San Juan says she hopes to help her sister and others by advocating for people to put themselves on the stem cell donor registry list. 

Her family is looking at organizing stem cell donor drives in Vancouver, Toronto, Calgary and some smaller communities. 

"We won't stop until a match is found," she said, and will continue to advocate for donations.

As of 5 p.m. Saturday, Jasmins said 221 people had submitted samples.

"It's been fantastic and we still have tomorrow," she said.

Volunteers will again be at the Cindy Klassen Recreation Complex, 999 Sargent Ave., on Sunday Nov. 4, between 1 p.m. and 6 p.m.

With files from Sam Samson