Team Addilyn Raising Awareness about Krabbe Disease by TEAM ADDILYN - over 1 year ago
"Team Addilyn consists of a close group of family & friends who have rallied around this Brave little girl as she battles Krabbe Disease. ( Krabbe Disease is a rare, fatal, genetic disorder. One in 100,000 live births in the US are affected with Krabbe. The average life expectancy is 13 months. It is crucial to raise awareness and get newborn screening implemented in the State of Maine as well as Nationwide!) Team Addilyn is doing our part by walking in parades & handing out flyers with the above information in hopes to eventually start a petition drive so we can get a bill passed in Maine for all newborns to be screened for genetic disorders which could potentially save precious lives!! This photo is of Team Addilyn following our 3rd parade this summer but our 1st with our AMAZING Team Addilyn shirts from CustomInk! "