Hayley, age 18

Chicago, IL

Hayley is a NPC warrior that was diagnosed in October 2011. It has been a journey with many doctors and even brain surgery before the NPC diagnosis. Hayley's family found the beloved Dr. Elizabeth Berry-Kravis who agreed to help with compassionate use of cyclodextrine in December 2013.  It has made all the difference in the world for Hayley and her family. Although this is not a cure it gives hope until a cure is found.  Hayley is currently attending school and the many events there. She participates in Super Singers, Special Olympics, enjoys swimming, going for long walks, loves music, being with her buds and family.