POWELL (WATE) – A young Knox County family’s efforts to get newborn screening for the disease that took the life of their baby daughter have succeeded.
The Tennessee Genetics Advisory Board has officially approved the addition of Krabbe and five other leukodystrophy diseases to the newborn screening in our state.
Previous story: Powell couple fights for newborn screening bill
Powell couple Christin and Kyle Webb’s daughter Mabry Kate was born with Krabbe disease, but didn’t show symptoms until it was too late for the only available treatment, a cord blood transplant. Mabry Kate died in March.
Krabbe is an inherited fatal disorder that affects the nervous system. The Webbs have made it their mission to fight for newborn screening for Krabbe and similar diseases. Not only did their daughter have it, but their son Owen was born with it as well earlier this year.
The family has been at Duke University Medical Center in Durham, North Carolina as he undergoes treatment to save his life. It’s crucial that treatment begins before a child starts to show symptoms, which is happening in baby Owen’s case.
Now that the state genetic advisory board has agreed to add Krabbe and five other leukodystrophy diseases to newborn screening in Tennessee, all that’s left is to line up equipment and logistics.
“We are so relieved that once it’s all in place, no other child will have to suffer with no answers in the way Mabry Kate did,” said Christin Webb in an email.