03/24/2015 09:23 EDT | Updated 03/24/2015 09:59 EDT

Mother Raising Awareness About Organ Donation

The mother of a nine-month-old baby with stage four renal failure is hoping to raise awareness about organ donation.

Ashley Barnaby's son Zaccari Buell has a rare kidney disease called congenital nephrotic syndrome — one of only two known cases in the Maritimes in the last 15 years.

Barnaby, her husband Jeff Buell, and their seven-year-old son Abaddon, left their home in Listuguj, Que., and Zaccari spent his first three months at the IWK Health Centre in Halifax.

He's being treated at the Moncton Hospital now and gets his kidney function tested at the IWK every month or two. But he is facing dialysis and will ultimately need a transplant, once he's big enough, said Barnaby.

It has reinforced her belief in organ donation, she said.

"You never quite know how personal it gets until it hits home and then, like I said, for Zaccari it's going to give him a chance at a bright future — a normal life," she said.

"He's only nine-months-old right now and he has his whole life ahead of him, so it will give him life. That's what an organ donation will be for him."

Barnaby has set up a Facebook page called "Little Warrior Zaccari," so people can follow his journey.

She says the page name reflects her son's spirit, which is strong, despite everything he has been through.

"He's amazing. He never loses that smile on his face and I make sure I keep his spirits up. We're always playing, being silly," she said.

"Like any mother, we just want them to be happy, so I'm trying to get him to have a somewhat normal childhood."

Barnaby hopes her story will help other parents facing difficult medical challenges.

She says when she's having a bad day, all she has to do is look at her son.

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