‘I’m very thankful’: N.B. boy with rare disease finally receives new kidney
The three-year-old New Brunswick boy whose mother took their quest to find an organ donor public has finally received a new kidney.
Ashley Barnaby’s son Zaccari was born with a rare kidney disease called congenital nephrotic syndrome and has spent most of his short life on the transplant list waiting for a kidney.
The Moncton family has been travelling to the IWK in Halifax three times a week for dialysis.
But Barnaby says she finally got the call.
“I answered the phone and it was our doctor on the other line,” she says, “and even just talking about it now I get goosebumps. He told me that they did find a kidney for Zaccari.”
They've had a false alarm before, so Barnaby says she couldn't believe it until she actually saw it
Ashley says when that moment came, the feeling was indescribable.
“As soon as they put (the kidney) in it started working. He's peeing up a storm," says Ashley. "For any kidney parent or kidney mom, not having your child pass any urine for like two years, it's pretty much like liquid gold you're seeing in there.”
Despite the ups and downs, Zaccari has always kept his spirits high. Barnaby says he was even smiling four days after the surgery.
“The kidney is working beautifully,” she says. “My heart goes out to the family that lost someone, but I'm so, so thankful because of that donor my son's able to be … healthy.”
That kidney came from their home province of New Brunswick
Because she was travelling so much for Zaccari’s dialysis, Barnaby decided to start a campaign on her vehicle promoting organ donations.
She says even though Zaccari has received his kidney, she doesn’t plan on taking the decals off the vehicle.
“We're taking off the ‘kidney needed,’ but we're going to continue to raise awareness on organ donation,” she says.
“He's never had a chance at a normal childhood. He's always known the hospital life. And now with the kidney and because someone registered, he's going to be able to have a normal childhood because of that person and that person's family.”
With files from CTV Atlantic’s Laura Brown.