It takes courage to turn the death of a child into a message of hope, but Quinn’s Legacy Society Run, held for the first time last year on a cool and rainy day in August, is bringing just that to parents who have been affected by the grief and financial stress of Sudden Infant Death Syndrome (SIDS).
Despite the weather, the race was a festive event marked by a release of red balloons, a BBQ, and more than 200 runners and walkers who raised $25,000 for the SIDS Calgary Society.
This year’s race is shaping up to be even larger.
“Our goal is over 300 participants, and virtual runners,” says Sarah Cormier, who founded the society along with her childhood friend Ashley Chapman, and friend Kelsey Davidson.
They formed the society after Cormier’s four-month-old daughter, Quinn Isla, passed away of SIDS in 2014.
“The purpose was to remind people that Quinn was here, and that her life had an impact, and to help other families in their grief journey,” Cormier explains in an interview along with Davidson at the Good Earth Coffeehouse in Airdrie along with Davidson.
Each year in Alberta, more than 25 children die of SIDS, and according to Statistics Canada, “in 2003–2007, SIDS accounted for 21% of post neonatal deaths and 6% of overall infant deaths in Canada.”
“It’s indiscriminant and it can happen to anyone. It doesn’t mean you’re a bad parent,” Cormier says.
Quinn Isla was born on Aug. 18, 2014, and died four months later on Dec. 28. Within a week of her passing, Cormier’s maternity benefits were cut off. After their daughter’s funeral, she and her husband, Lee, went to Service Canada to present the death certificate and to have Quinn’s social insurance number revoked. There, they were told they had to repay a week’s worth of benefits, the week in which their daughter died.
Several days later, a Service Canada representative called and asked for repayment of January’s Universal Tax Credit, which they had received automatically.
On top of their grief, Cormier says, “You can’t believe this to is happening to you.”
“This is the horrible side of the story,” Davidson says. “There are no bereavement benefits for a SIDS death. It’s almost as if your child hadn’t been born.”
But the Cormier’s were the lucky ones; they only had to return about $300. Some parents, who hadn’t known to go to Service Canada immediately, have had to pay back months of benefits, while others, because of grief and financial stress, have lost jobs and homes, and have suffered marriage breakdowns.
SIDS Calgary Society guided her family through the grieving process, Cormier says, but it was then that she and Lee began to hear similar stories involving the loss of maternity benefits and a lack of bereavement support. They felt they had to do something, to remember Quinn by, and to help other families.
“It makes no sense when you think about it, to not have some kind of (bereavement) benefits for parents,” Davidson says.
“We’re talking about 25 families a year in Alberta. It’s not millions of dollars,” Cormier adds. “It’s the injustice of it. Of not being acknowledged as a parent.”
Her sister suggested they hold a charity run, and Quinn’s Legacy Society was born.
Cormier’s husband designed a winged heart-shaped logo with the society’s name on it, and with help from family and friends, a partnership with SIDS Calgary, and support from local businesses, last year’s race exceeded expectations.
“It was really amazing. People came because of Quinn, but they also came to make a difference,” Davidson recalls.
But the race reached far beyond Airdrie. A friend of Cormier’s was in New Zealand and organized an event there, and virtual participation, in which participants register online and then run on race day or at their convenience, boasted runners from across Canada.
Besides bringing awareness through the run, they’ve also met with Blake Richards, Conservative MP for Banff-Airdrie. He’s been on board, Davidson says, but with the recent change in federal government, “it’s not going as well as we’d hoped for.”
Richards, in a phone interview from Ottawa, says the election interfered with a lot of things, but that the Cormier’s issue is still very much on his agenda.
“We’ve been giving this some thought, and trying to figure out how to best bring this forward and make it right,” Richards says.
That might involve a private member’s bill or other policy initiatives, but either way, he says, to have government “clawing back money” when parents are grieving the loss of a child is “just wrong.”
“That’s sort of where we’re at, it’s something we have to get done.”
In the mean time, Cormier and Davidson continue to make a difference.
Through SIDS Calgary, they were able to offer support to one family in particular who had lost an only child.
“That was very emotional and powerful to see the money at work,” Cormier says. “The tears that rolled when they said they’d be able to pay their bills and not get evicted were huge.”
For this year’s event, the society has introduced a stylized orange fox as a symbol for the race. Inspired by a children’s book, The Memory Tree, which the Cormier’s shared with their five-year-old daughter, Layla, to help her understand death, the fox logo is on shirts, socks, and other items.
They’ve also produced a short promotional video, which can be seen on YouTube at: https://www.youtube.com/watch?v=u7O_5856eFw
The race will be held on Saturday, Aug. 20, at 10 a.m., rain or shine, starting at the Monklands Soccer Park in Airdrie. Participants, whether at the event or as virtual runners, can register in advance online at the Running Room events website.
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For more information, email Quinn’s Legacy Society at firstname.lastname@example.org
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