Nova Scotia Mother pushing for change to organ donation rules in Canada

The mother of a Nova Scotia toddler with a life-threatening illness is asking the federal government to change its organ donation rules.

Ashley Barnaby’s 18-month-old son Zaccari was born with congenital nephrotic syndrome, a rare, life-threatening kidney disease that causes swelling in the body.

Zaccari’s family was told he would need a new kidney before his second birthday. He’s spent most of his short life in a children’s hospital in Halifax.

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“The longest time was six months when we were here, straight, and it was after a life-threatening infection,” Barnaby told CTV Atlantic on Friday.

The toddler has been on a wait list for a kidney transplant since being diagnosed at nine weeks old. Zaccari is one of 130 people waiting for a kidney in Nova Scotia.

“We’ve really been pushing people to become organ donors. There’s a lot of people like him waiting for the gift of life,” Barnaby said.

In an effort to change her son’s outlook, Barnaby started a petition asking the federal government to change current organ donation rules. Barnaby’s suggestion is that Canadians should have to opt out of being an organ donor, rather than the current system that requires them to opt in. The current system means Canadians must sign up through their provincial health card and inform their family of their wishes.

A similar “presumed consent” system was introduced last month in Wales, and opt-out rules are also in effect in several other European countries including Spain and Austria.

So far, her petition has more than 2,000 signatures.

Barnaby said she understands why some don’t want to donate their organs and tissues, but that many simply forget to register or don’t make time to sign up by mail or online.

“Think about how many people want to be organ donors but with their busy lives simply forget to register,” Barnaby wrote on the change.org page.

“Think about the hundreds and thousands of lives that could be saved.”

With a report from CTV Atlantic’s Amanda Debison

http://www.ctvnews.ca/health/mother-of-ailing-n-s-toddler-pushing-for-change-to-organ-donation-rules-1.2721061