Filipino teen hopes stem cell donor drive will help find someone to save her life

Just months ago, Roshlind Mance was a normal teenager going to classes and participating in the drama group at her Calgary high school.

Today, she stays at home, hoping someone in Winnipeg will save her life.

"I'm no longer able to do what I used to do as a normal teenager," said Mance. "I can't go outside anymore. I'm permitted to stay at home because my immune system is so low."

The 16-year-old was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) this summer — a life-threatening combination of blood disorders that disrupts the normal production of blood cells.

To treat it, she's now relying on a stem cell transplant. No one in her family is a match, so she's searching for an unrelated Filipino donor — which might be a very difficult task.

Right now, there are more than 400,000 potential donors on the Canadian Blood Services stem cell registry, also known as the OneMatch Stem Cell and Marrow Network. But less than one per cent of those people are of Filipino descent.

'I'm just so scared to lose her,' says sister

Mance says she first noticed something was wrong when she felt fatigued one day on her way to school. Then, she had a panic attack because she couldn't breathe and was rushed to hospital.

"They said my blood counts were extremely low and … I was the sickest person at that hospital," said Mance.

Since then, she hasn't been able to go to school. Her 27-year-old sister, Adrienne San Juan, says the diagnosis has been tough on the entire family.

"Thanksgiving weekend, Roshlind was rushed to the hospital, and we ended up spending the whole weekend there because she wasn't doing well at all," said San Juan.

"After that, I had a panic attack. I'm just so scared to lose her."

The sisters live in Calgary, but grew up in Winnipeg.

Right now, Mance gets blood and platelet transfusions twice a week. She says her doctors applied to the province of Alberta to fund an expensive PNH drug called Soliris, but were denied.

A spokesperson for the province of Alberta told CBC News that coverage of the drug is available for people with PNH "who meet clinical criteria."

"While we cannot comment on individual cases, we will be reaching out to the patient's clinician to direct them to where applications can be made," the spokesperson said.

Winnipeg donor drive

Without the drug, Mance is now relying on finding a stem cell transplant from among the small pool of donors of Filipino descent.

She's not alone in facing that problem —​ only 31 per cent of Canada's potential stem cell donors are from non-Caucasian ethnicities, according to Canadian Blood Services.

That's why members of Mance's family who still live in Winnipeg are organizing a stem cell donor drive in the city this weekend.

Winnipeg has one of the largest Filipino populations in Canada.

A stem cell drive involves potential donors taking a questionnaire about their general health. Then, the potential donor's cheek is swabbed and the sample is sent to a Canadian Blood Services lab.

'Time is of the essence'

San Juan and her family are hopeful they will find a donor for her sister, but it takes about six to eight weeks for the swabs to be processed.

"That's why time is of the essence when it came to these donor drives," said San Juan. "We can't wait for Roshlind to suffer any longer."

Even if a donor is found, San Juan says there's a small chance her sister's body will reject the transplant, and she might die.

"Just coming out to these events is a big help for me and other patients. Not just Filipino patients, but others who are working for a match," said Mance.

"You're potentially saving a life, so just coming out there, it means a lot from patients like me."

The stem cell drive is at the Cindy Klassen Recreation Complex on Nov. 3 from 10 a.m. to 5 p.m. and Nov. 4 from 1 to 6 p.m.