At 11, he suffered in palliative care for weeks. His mom says MAID should have been an option

WARNING: This story contains images and details of a child near the end of his life.

Valérie Daigle wishes her son's life could have ended differently — dignified and pain-free.

Instead, she says 11-year-old Grégory Tanguay was cooped up in a palliative care room in the Fleurimont Hospital in Sherbrooke, Que., conscious and whimpering as he suffered for weeks from malnourishment, seizures and infection.

From birth, Grégory— whom she affectionately called "Greggy" — was diagnosed with neurological disabilities including cerebral palsy. He was non-verbal and could neither walk nor eat on his own.

Daigle says she'll never be able to erase haunting memories of doctors being unable to ease her son's pain.

"Seven weeks of suffering for a child: I find this abominable. If he had suffered like that in my home, I would be speaking to you from behind bars," said Daigle, who lives in Shawinigan, Que., in the province's Mauricie region.

"My little guy, [all] I could do was stroke him, reassure him the best I could but he was in pain."

Daigle says MAID could have allowed her son to die with dignity.

She is now calling for better end-of-life care options for children — including the extension of medical assistance in dying (MAID) for some who are terminally ill.

"I don't want a child to die because he's disabled," clarified Daigle. "However, there comes a time when the limit is reached and these children no longer have any quality of life and suffer a great deal."

Since 2016, Canadian adults can qualify for MAID if they have a grievous and irremediable medical condition and are able to provide informed consent. In 2022, MAID accounted for about four per cent of deaths in Canada, according to the government.

As more people apply for assisted death, especially in Quebec, the conversation around who should be eligible continues to grow. But some experts and advocates say Canada may not be ready to extend the program to children due to major ethical and moral concerns.

Grégory's case is even more specific.

Given his health, it was impossible for him to consent to assisted death. But his mother insists it would've been the humane way to end his life.