N.B. mother pushing for changes to organ donation rules
The mother of an 18-month-old boy with a life-threatening kidney disease is calling on the federal government to change regulations around organ donations.
Ashley Barnaby has started a petition asking for presumed consent for organ donation in Canada.
That would mean residents would have to opt-out of being an organ donor, rather than opt-in.
"We've really been pushing people to become organ donors,” said Barnaby. “There's a lot of people like him waiting for their gift of life."
So far, the petition has more than 2,000 signatures.
Barnaby’s son Zaccari was born with congenital nephrotic syndrome – a life-threatening kidney disease. He started having kidney issues when he was nine weeks old and is on the waitlist for a transplant.
Another 130 people are on that waitlist in Nova Scotia.
In 2014, Nova Scotia's Health Minister Leo Glavine was considering legislation that would require people to opt-out if they didn't want their organs and tissues donated after they die. However, the changes were not made.
"I understand both sides,” said Barnaby. “People don't want to give their body away to the government, and have the government make all of the decisions. On the other hand, there's a lot of people who simply forget to register."
To be an organ and tissue donor, you have to sign up through your health card and inform your family of your wishes.
As Zaccari waits for a new kidney, his story is being shared by the IWK Foundation.
"He's a wonderful kid,” said Liz Leclair of the foundation. “We're obviously all rooting for him."
The disease has forced Zaccari to spend much of his young life at the IWK.
"The longest time was six months when we were here, straight, and it was after a life-threatening infection," said Barnaby.
Whether or not legislation will change, Barnaby hopes it will at least get people talking about donating in the new year.
With files from CTV Atlantic’s Amanda Debison.