THUNDER BAY — Zephyr Bouchard, an eight-year-old boy from Fort William First Nation, has been living most of his life without treatment for a brain hernia he was born with.
Despite previously meeting with MP Patty Hajdu, the minister of health at the time, regarding Zephyr's need to access healthcare in 2020 and treatment being possible for him, his family said it was something he was never able to access in Canada.
“I have a dying child and I think this is really just about him and his right to live, his right to access ethical care and his right to live free from discrimination,” said Kiera Michell, Zephyr’s mother.
Michell was among many family and friends who gathered in support of Zephyr outside Hajdu’s office on Friday to encourage her team to advocate at the federal level for disabled children and the issues faced in northern communities.
She said when they took Zephyr out of the country into the U.S. for assessments and healthcare to see if treatment was available for him, they learned many things there that were really difficult to process as a parent.
“Not only was Zephyr able to get treatment, he could have had treatment even as a baby. So his eight years of suffering and pain was really preventable,” said Michell.
Over the years, Michell said she felt that Zephyr’s story, his right to be there and his right to live was really violated as he was written off in Canada by multiple institutions and channels that were supposed to be supporting him and respecting his dignity to be there.
Living most of his life on reserve with a brain hernia and not accessing available treatment, Michell added, reinforces a lot of the systemic issues they’re dealing with as Indigenous people in Northern Ontario trying to access proper health care.
“We really tried hard to open up other avenues to get him the help and support he needed. And we saw deflections, we saw delays and most of all we saw debates about a little boy’s life,” said Michell.
Damien Bouchard, of Aroland First Nation, has lived in Fort William First Nation’s territories since his son was born. He said they hope that this doesn’t happen to another family and child like Zephyr because there’s been a lot of holes in his treatment.
“I don’t know if it’s whether we’re from Northern Ontario or being Indigenous," said Bouchard.
"We know this country has a long history of things that they’ve done wrong to children of Indigenous background.”
“It just seems like we’ve been back and forth trying to help him… We moved to Toronto, (it) didn’t work out. We’ve just been having a hard time and a single-income family,” he added.
While the family has received some help from Jordan’s Principle, including transportation and assistance with attending some appointments, Bouchard said surgery is what they're ultimately seeking support for.
There’s a lot of red tape around it now and they’re cutting off funding for children like Zephyr because of some fraud issues, he said.
“They should look at his case and say, ‘This is what the funds are for,’” said Bouchard.
“What we’re trying to do is draw awareness to his story and what he’s been going through as a young little boy,” he added.
Michell said that they didn’t want to hear any more debates about his life.
“We live in a country where we’re supposed to have universal health care and we’re a part of the Robinson-Superior Treaty where we are supposed to really talk about bringing self-determination, sovereignty and justice back into our communities,” said Michell.
“And I felt that Zephyr was really silenced over the years.”
She said she really felt that Zephyr didn’t get the recognition or the support he needed, even from their band or communities and reserve.
“I know we’re in really critical moments in treaty history right now. A lot of our leaders talk about Every Child Matters and it’s a movement of justice, but Zephyr never had justice,” said Michell.
“Nobody moved for him, so I truly feel like this is keeping our leaders accountable, that every child does matter, even a child like Zephyr.”
It's been eight years of discrimination from Canada, the healthcare system and the hospitals, she said, everywhere they turned there was some sort of delay or blockage for Zephyr.
“I still wanted Zephyr to know that he’s cared about. We love him and to give him the space to know that he has the right to be here. He has the right to tell his own story. He doesn’t have to be written off,” said Michell.
