Stories of our love, heartache and friendship. Written by a mother.
Our family is dedicated to raising awareness for Batten Disease. Batten Disease is a rare degenerative genetic disease that affects otherwise healthy children who can sing, dance and bounce. From a young age affected kids start to lose their ability to walk, talk, see and smile. There is no cure for children affected and it will eventually take their lives. Awareness and research into this rare disease is imperative to find a cure.