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Grieving Okanagan mom uses her voice to help other families who lost a child

Lake Country mother Toni Nicholls holds her late child in this undated photo.
Image Credit: SUBMITTED/ Toni Nicholls

A Lake Country mom who is grieving after the tragic loss of her little girl to cancer last fall is using her voice to make a difference for other grieving families.

Toni Nicholl’s five-year-old daughter Rylie died in hospice at the end of October, 2023 after battling cancer for almost three years.

Nicholl and her husband also have a son who is on the autism spectrum. Both children were receiving monthly child disability benefits, which she said was a critical financial help after she quit her job to be with her daughter in Vancouver for cancer treatments, and food and travelling expenses were piling up.

“Going through the journey, caring for a sick daughter, we relied on those benefit funds,” she said. “Parents of critically ill children don’t have an income to support extra bills, food costs and travel expenses. We also relied on GoFundMe and help from family.”

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After their child died at Canuck Place Children’s Hospice in Vancouver, the family spent more money staying in Vancouver while they waited for an autopsy and the funeral home to complete its process before they could bring their child home.

They came home to letter from the government. While the child died on Oct. 29, the child disability benefit went through to the family on Nov. 1, and the government wanted the money back.

“We were distraught, we’d had to pay for accommodation and eating out in Vancouver, we had to be there because there isn’t a children’s hospice here. We thought we’d have to pay it back at tax time or have an option of paying it back in instalments.”

On Dec. 1, instead of the family receiving the son’s disability tax credit, it was clawed back by the government to cover the overpayment for the deceased daughter. 

“It was such a financial punch to the gut, and right before Christmas,” Nicholl said. “We’d spent thousands of dollars staying in Vancouver waiting to bring our daughter home, we didn’t want to ship her home in the mail.”

On April 16, an amendment was made in the 2024 Federal Budget under the Canada Child Benefits for Grieving Families section that now reads: "Grieving families should not be worried about their finances during the most difficult of life circumstances. However, some families who have lost a child may currently receive correspondence from the government requiring them to repay any Canada Child Benefit amount received after their child's death.

“In recognition of the burdens on grieving parents, budget 2024 announces the government’s intention to amend the Income Tax Act to continue to pay the Canada Child Benefit for six months after a child’s death, as of January 2025.”

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Nicholl said it will be a big difference for families.

“It’s too late to benefit our family but I’m grateful it will be a huge benefit for grieving families going forward,” she said. “Families won’t get that letter clawing back payments right after their kid dies.”

Having the payments come in every month for six months could help give parents more time to grieve and nurture their other children.

“When your child passes away the last thing you want to do is return to work right away. I was in no position to return to work, my husband needed time off to grieve and process.

“I can’t bring my daughter back but I do have my voice and can try to help other families. I don’t know more than others but have always had a voice of advocacy. Not all families can talk about it, we’re so traumatized, and lost and damaged.”

— This article was corrected at 1:37 p.m. on Tuesday, May 21, 2024 to clarify the family did not spend money staying at Canuck Place Children's Hospital.

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