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Christmas present comes early for Greater Trail family

Nearly five months after 16-year-old Kolby had a heart transplant she was back at school in Rossland at the beginning of October.

A Christmas present came early for the Zanier family.

Nearly five months after 16-year-old Kolby had a heart transplant at the Stollery Children’s Hospital in Edmonton on July 19, she was back at school in Rossland at the beginning of October—at the head of her Grade 11 class at Rossland Secondary School.

It was less than 18 months ago that Kolby was the first pediatric patient in Canada to receive a leading-edge heart pump that helped her heart pump blood through her body.

And it was 12 years ago when she was diagnosed with Alstrom Syndrome, a rare genetic disease that can affect vision, hearing, kidney and liver function, and can also cause heart failure.

But that ordeal is nearly over for Kolby and her family, said her mother Aileen, and the gift of a new life is one they aren’t looking in the mouth. It’s going to be a great Christmas, she said.

“She is the strongest kid I know,” she said. “She took a couple of days off (after surgery) and then went right back to school. She hasn’t stopped since. She’s a really big wow.”

Before Kolby left Edmonton in October after her surgery, she and the rest of her family—Aileen, her father Barry, and sisters Taryn, 25, and Kailyn, 19—participated in the one-kilometre Hope for Little Hearts Walk/Run, a fundraiser for little children with heart problems.

She is healing up after her surgery and is now feeling great, said Aileen, but she has had some complications. Kolby is prone to bleeds, Aileen said, and when she had her artificial heart put in 18 months ago she had two brain bleeds, one of them took her sight completely.

“Her sight was the biggest (complication) of all,” said Aileen. “That won’t return. That was the hardest part of it all for her to come out of.”

With her transplant in July Kolby had two more bleeds that were in her chest, but she was able to get over those.

However, there is some concern over her kidneys. Right now she is “borderline dialysis” and might need a kidney transplant, said Aileen.

“We’re hoping they kick back in because apparently the kidneys are pretty lazy and they need a good boot to start (up). We’re hoping that will work for her,” she said.

The month after Christmas will be crucial, said Aileen. That’s when Kolby will be six months post-operative with the transplant and she will be heading back to Edmonton for a major check up.

That is when doctors will do a biopsy of her heart, said Aileen, to see how the transplant is taking. And if everything is good her heart transplant procedure will be declared a success, she said.

“And if everything continues as well as it has been that is when they will start weaning her off the 30 or so medications she is on,” Aileen said.