Ottawa girl with rare disorder encouraging Ontario students to become stem cell donors

Hillary McKibbin has a rare blood disorder called Aplastic Anemia. (Photo courtesy: Kelly McKibbin)

OTTAWA — An Ottawa girl with a rare disorder is encouraging students to become stem cell donors and possibly save a life.

Hillary McKibbin, 7, was diagnosed two years ago with aplastic anemia, a rare blood disorder that prevents her body from producing enough new blood cells. Since then, she and her mom Kelly McKibbin have become tireless advocates for stem cell donations.

Speaking on Newstalk 580 CFRA's "CFRA Live with Andrew Pinsent," Kelly said the latest campaign is aimed at getting teenagers to register with the Canadian Stem Cell Registry, adding that they can earn community service hours toward their Ontario Secondary School Diploma.

"Those hours are essential to get your diploma and what better way than to participate with Canadian Blood Services," she said. "Students, historically, have helped with blood donor drives in Ontario but now they've opened it up to allow students, virtually, to join the stem cell registry from the safety of their home to complete those community service hours."

In a post on her website, McKibbin says Canadian Blood Services is looking for young adults age 17 to 35 to join the registry; however, students in Grade 8 and up can begin the process and earn community service hours toward their diplomas.

"It's just such a golden opportunity … letting these students decide whether that's something they can or be willing to do in the future to help diversify the registry in Canada, which is desperately in need of diversification," she said.

Students can earn up to five hours of community service by taking a test after watching videos, reading about stem cell donations and what’s involved. Those who are old enough, 17 and above, can earn an additional five hours by registering to become a stem cell donor and completing a swab test, which will be mailed to them.

"It's a very good idea and all you have to do is swab both sides of your cheek and hand it in to Canadian Blood Services," Hillary said of the process.

The completed kits are mailed back to Canadian Blood Services in postage-paid envelope.

Two-thirds of people on the registry are Caucasian. Canadian Blood Services says having donors from all racial backgrounds can help people on waiting lists for transplants find a match.

"A patient’s best chance of finding a matching donor is among those who share their ethnic background. We need donors from as many diverse ethnic and mixed-race backgrounds as possible," Canadian Blood Services says.

There are 800 people in Canada waiting for a matching donor to treat their conditions, including Hillary.

"We're hoping that maybe one of the students in one of our Ontario schools has that life-saving match that somebody needs; maybe us, someday," Kelly said.

Living with the pandemic

Hillary had been on an immunosuppressive treatment for 18 months, her mother said Sunday. She's now off her daily medicine and is doing well, but the pandemic has heightened the need for regular infection control practices, which had already become normal in the McKibbin household before the pandemic struck.

"When you're dealing with a rare disease, you ready don't know what tomorrow holds," Kelly said.

"I've been doing really good. I've been really busy with virtual school," Hillary said.

"The only message we have," Kelly said, "is if you really follow the rules and be diligent, you can have success. There's been no common cold in our home for over two years and we don't take any chances at all. When you're dealing with someone with no white blood cells, that's what you have to do."

Hillary and Kelly have hosted numerous swabbing clinics in the past in order to encourage people to see if they are matches for someone waiting for a stem cell donation, but the pandemic has put those on hold. That's why the new campaign for students is so important, Kelly said.

"Canadian Blood Services is reaching out to donors who are on the registry and, regrettably, only half of them are willing to donate at this time," she said. "The need is desperate to get this campaign out there so that those who are willing and able to help out can."