We like to think that we are one in a million, but what happens when that’s exactly the news that you don’t want to hear? Peta’s extraordinary story and that of her family is one that is desperately sad, but it has forced her to connect with others in ways she could never have expected.

Peta Murchison is a mother dedicated to raising awareness for Batten Disease — 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.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx