In December 2010, Haley was diagnosed at Duke University Hospital with a rare genetic disorder called globoid-cell leukodystrophy, or also known as Krabbe disease. A defect in the GALC gene causes Krabbe disease. Persons with this gene defect do not make enough of a substance called galactocerebroside beta-galactosidase (galactosylceramidase). The body needs this substance to make myelin, the material that surrounds and protects nerve fibers. Without it, myelin breaks down, brain cells die, and nerves in the brain and other body areas do not work properly. This disease can cause blindness, deafness, speech and walking disabilities and is usually life threatening.
Haley was recently granted her wish from the Make-A-Wish Foundation for a trip to Disneyword! She is currently attending preschool and loves to ride the bus. This disease progresses rapidly and there is very little treatment. There is no cure for Haley. You can visit Haley on her Facebook Page.