A mother who drives her three-year-old son between Moncton and Halifax three times a week has covered her car in decals, encouraging others to become organ donors.
Ashley Barnaby’s son Zaccari was born with a rare kidney disease called congenital nephrotic syndrome. He’s spent most of his three years on the transplant list waiting for a kidney.
“You wake up, that's the first thing you think of,” says Barnaby. “My phone rings and I don't recognize the number, I kind of hold my breath hoping that I hear the doctor on the other end saying that we found a kidney.”
The family's home is in Moncton. Barnaby has another child going to school there and the family can't afford to live in two places. So she packs up Zac Monday, Wednesday and Friday and does the 260-kilometre drive to the IWK for dialysis.
“I knew that we were going to be doing this travel. I wanted to go ahead and try to do something, I guess, that added an extra purpose to our trips,” says Barnaby, “so I got a fancy decal for our car that read ‘be someone's hero, be an organ donor.’”
The family was doing home dialysis, but a rare infection meant he now has to do his treatments at the IWK. The dialysis machine is only for tiny humans,
There are so few Maritime children who need dialysis, so the IWK was the closest hospital that had one for Zac.
The wait for a kidney can be long, especially for kids.
“It's really important that we include the pediatric population when we're talking about organ donation because we have so many tiny people who are waiting for small organs that go in small bodies,” says Dr. Kristina Krmpotic.
More than 4,500 Canadians are waiting for transplants right now. The majority are adults. The Canadian Institute for Health Information found that in 2015 in Atlantic Canada, there were four children waiting for a kidney and 263 adults.
That’s why Dr. Krmpotic encourages everyone to register as an organ donor.
“More and more children are surviving with chronic conditions,” she says. “As a result, they go onto need organ transplants for their survival and improvements in their quality of life. Unfortunately, our current donor pool in the whole of Canada is not enough to meet the demand.”
The wait continues for Zac and his family.
“He just wants a normal life,” says Barnaby. “He wants to experience childhood like everybody else has. He hasn't had that opportunity yet and we're hoping that a kidney gives him that second chance.”
They'll continue making the drive three times a week until someone becomes Zaccari's hero.
With files from CTV Atlantic’s Laura Brown.
