Augusta - We have an update on a story that touched many of our viewers. It's the story of 17-month-old Addilyn Aavis.

When she was 6-months old, she was diagnosed with Krabbe Disease, a fatal condition that attacks the central nervous system of newborns.

Her family has been fighting to raise awarenes of the disease that strikes 1-in-100,000 newborns.

Tuesday in Augusta, Addilyn's friends and family were on-hand as Representative Lance Harvell of Farmington introduced a bill that pave the way for parents of newborns to get pamphlets outlining the warning signs of Krabbe disease. "We're just looking at giving parents an opportunity to think if they have a problem to have the test done," Harvell said. "Obviously at some point it's a matter of cost and so that would come into play if you were trying to put it for an outright mandatory testing. But this is a start, requiring an informational pamphlet."

Addilyn's mother, Jamie Davis, who said she was thrilled to get the word out about Krabbe disease, gave us an update on Addilyn. "Addilyn is doing wonderful right now," she said. "I'm very pleased with how she's hanging in there. She's strong. She's holding up the fight. I'm very thankful," she said.

You can follow Addilyn's progress on facebook:

http://www.facebook.com/#!/AddilynsJourneyOfHope?fref=ts

to learn more about krabbe disease you can check out:

http://www.huntershope.org/site/PageServer

This is a link to our original story featuring the story of Addilyn Davis:

http://www.wabi.tv/news/37413/new-sharon-parents-coping-raising-awareness-of-disease-thats-stricken-their-baby

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