COEUR d’ALENE — Anjee Wavrick remembers her 3-year-old son as a hero.

“Connor was so strong in every way possible,” Wavrick said. “Even when he was in physical pain, he would ask me if I was OK and would say that he wanted to say a prayer for daddy and sis. He coped with being sick by holding mom’s hand and smiling through it all.”

Connor was diagnosed with Krabbe disease, a rare and aggressive genetic and neurological disorder, in June of 2024.

Though there is no cure, its progression can be slowed through a bone marrow transplant, which he received at Seattle Children’s Hospital a month after being diagnosed.

However, even after the transplant, Connor remained hospitalized until January. He passed away Feb. 8.

“Krabbe disease changed our lives forever, and ultimately took our son from us,” Wavrick said. “We will never be the same again.”

In the wake of their son's death, the Wavrick family has found strength in advocacy.

Newborn screening for Krabbe disease is not required in Idaho, Wavrick said, which they hope to change.

Bone marrow transplants are only effective in slowing the progression of the disease if it’s performed in the early stages, meaning early detection is key to better outcomes.

“This is why newborn screening for Krabbe disease is so important,” Wavrick said. “We are pushing for this every day.”

In partnership with KrabbeConnect, a nonprofit dedicated to improving patient care and finding a cure for Krabbe disease, the Wavrick family is hosting a fundraiser Aug. 23 at The Coeur d’Alene Resort.

"Connor’s Kure for Krabbe" is intended to raise awareness and push for newborn screening in Idaho, and raise money for research and supporting families impacted by the disease.

“Most importantly, (it’s to) honor Connor’s life and leave a legacy of his strength,” Wavrick said.

Info: scan the QR code or email Wavrick, [email protected]. 

    Connor Wavrick was diagnosed with Krabbe disease, a rare and aggressive genetic and neurological disorder, in June of 2024.
  

    To learn more about Connor's Kure for Krabbe, scan this QR code or email [email protected].