Jack and Lilly Pinchuck have been selected into the Champion Child Program, making them the faces for the Stollery throughout 2018.
The program is done through the Children’s Miracle Network and the Stollery Children’s Hospital in Edmonton.
“Hospitals across North America team up and they choose one child per hospital every year,” said their father Jay. “For the Stollery for northern Alberta, they chose Jack and Lilly this year, which is the first time the Stollery has ever had siblings.”
Jack and Lilly were both born with a rare liver disorder called Crigler-Najjar Syndrome, it causes a child to be jaundice from infancy and onward.
“It’s a genetic disorder that only like 600 people in the world have, so it’s very rare,” said 16-year-old Jack. “It increases the bilirubin, which makes your eyes and skin yellow and causes jaundice and if it crosses into your brain it can do harmful damage, so it’s obviously something we couldn’t live with forever, so we needed a liver transplant.”
Jack reached the point of needing a transplant in 2014 and Lilly received her's last February. Their aunt and uncle were their living donors.
“Prior to the transplant they were jaundice their whole life. Their whole life they had yellow eyes and skin so obviously they were a different colour then all the kids in their class and they had to sleep under photo therapy lights so their beds were equipped with four-foot blue bulbs,” explained their mother Deborah.
She described watching their skin change colour after the transplants as; incredible.
While both children had complications after their surgeries, everyone is now doing well and they are back to school at Fort Saskatchewan Christian. Lilly is now playing soccer.
They are really looking forward to their new role with the Stollery and the many events they get to attend throughout the year.
“I feel really excited and I want to honour the kids that go through such hard times in the hospital,” said 12-year-old Lilly.