Knox County family who lost daughter to rare disease teaches students how to impact Tennessee law

The Webb family teaches hundreds of students at Adrian Burnett Elementary how to impact Tennessee law

KNOXVILLE (WATE) – Students at Adrian Burnett Elementary were taught how to make make an impact in Tennessee law from a family who has already done it.

Christin and Kyle Webb joined State Representative Bill Dunn to teach students how everyday people can change or add Tennessee laws. The Webb family has already impacted Tennessee law by pushing for a newborn screening law called the Mabry Kate Act.

Previous story: Krabbe disease added to Tennessee newborn screening

The act comes after the Webb’s daughter, Mabry Kate, died from a rare genetic disease known as Krabbe Disease. If screening for that disease had been made available in Tennessee, Mabry Kate could have been saved.

The Mabry Kate Act will go into effect next July and will provide screening for five other leukodystrophy diseases in our state.

“I think the Webb family has done a good job of just educating the public,” said Representative Dunn. “While the law will go into effect July first, there are so many people that have been touched who’ve known to look for this in their newborns.”

The Webb family is now sharing their story in hopes others will get involved in the law making process

“I didn’t know how receptive the students would be to understanding the disease and being interested in it,” said Christin Webb. “I’m very pleasantly surprised at how interested they are and the questions they asked.”

The Webbs now have a son who was also born with Krabbe disease. However, thanks to early screening, the family says he is being treated with cell transplant and is doing well.

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