New Sharon - A couple from New Sharon is coping with every new parent's worst fear.

Their child has been striken with a disabling disease and now they're trying to raise awareness of it with hopes of helping other newborns.

Life has not been kind to little 17-month-old Addilyn Davis. Not long after she was born, her mother Jamie says she knew something was wrong. "Immediately. She no more came out and she was stiff in more ways than one. She was like a little board with her arms stretched right out."

Doctors told the Davis' that Addilyn would grow out of her condition and Jamie says some of the nurses actually accused her of taking drugs while she was pregnant.

The truth is every parents' nightmare. Just after turning six months old, Addilyn was diagnosed with Krabbe disease, a condition that strikes only 1 in 100,000 newborns. Krabbe disease will take her sight and her hearing before eventually taking her life. "It attacks the nervous system. So eventually, as Addilyn grows and the disease progresses, her respiratory system will shut down," Jamie said.

The medical costs for a child suffering from Krabbe disease are estimated at roughly $700,000 per year. The Davis' were recently contacted by the Department of Health and Human Services who informed them they were losing their MaineCare coverage. Jamie was told her husband Kyle, who works full time, earns too much money for them to qualify. Jamie said his employer does offer health insurance, but the premiums and deductibles make it unaffordable.

A few days after getting the bad news, the Davis' were told Addilyn would be covered by the Cub Care program. It's slightly more expensive, but affordable and ensures that Addilyn will continue to receive the care she so desperately needs.

Now her mother is on a crusade to raise awareness about this unforgiving disease. Jamie Davis wants Krabbe disease added to the list of diseases newborns are screened for. While there's no cure, had it been caught sooner it could have meant a better quality of life for little Addilyn and others stricken by Krabbe. "They are up walking, talking, functioning as a 2-year-old child should be."

It's been said the bond between a mother and her child is unmistakable. It may be even stronger for a mother coming to terms with a reality few of us can even allow ourselves to imagine. "We've lost four Krabbe children in the past week," Jamie said. "And that kind of brings reality right to the surface, knowing that I'm someday going to have to bury my daughter, and that terrifies me. I don't know, I'm in survival mode. You do what you gotta do. Day by day. And it's all for her."

On average children diagnosed with Krabbe disease usually live to be around 13-months old. Addilyn Davis will soon be turning 18-months old.

To follow her progress, you can find her on Facebook by searching "Addilyn's Journey of Hope."

https://www.facebook.com/AddilynsJourneyOfHope

To learn more and help in the fight against Krabbe disease, you can go to the Hunters Hope website:

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

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