Personal Stories

Sibling Spotlight

Tenley (age 10)

Hi, my name is Tenley. I am ten years old and in the 5th grade. I live in Leesburg, Va with my parents Carl, and Jeannie, my two brothers Bennett and Jackson, and our two dogs Hoop de Doo and…


Sue and Tony McCain

Parents to 23-year old Matthew, diagnosed with LGS at age seven.

The LGS journey is tough. Many families struggle with isolation, anxiety, and fear for the future. Sue and Tony explain that although their path has not been an easy one, they are grateful for each and every day with their…