Born in August of 2011 Addilyn was diagnosed in February with Krabbe disease, a genetic disorder of the central nervous system. Unfortunately there is no cure of treatment for the disease, so Addilyn faces a shortened life.
Eighteen family members, made the trip with Addilyn, including her parents Jamie and Kyle Davis. The trip to Disney was made while Addilyn still had her sight and could feed from a bottle.
“My family wanted to be there,” Jamie said, voicing her gratitude. “It meant so much that our community came together for our baby girl, Kyle and I. There was nothing that could compare to watching her meet Mickey.”
Krabbe disease affects one out of every 100,000 people in the United States. It was named after the doctor who discovered it in the early 1900s.
Jamie is devoted to raising awareness of Krabbe disease. In addition to passing out brochures at local parades, a walk in Addilyn’s honor is being planned for early 2013. Their family’s experiences are written about on Facebook under “Addilyn’s Journey of Hope.”
Davis also wants to see genetic testing for the disease at birth. New York is the only state that automatically tests for it now, she said.
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