In this episode, Rachel Madel interviews Jesse and Holly Erickson, parents of Bedford, a young child with Schwartz-Jampel syndrome. They share their journey to diagnosis, what it’s like navigating a rare condition with limited research and few clear answers, and the day-to-day realities families face such as unexpected barriers in common environments.

They also describe how posts on social media gained momentum and sparked an extraordinary community response which fueled the effort to create an inclusive playground so Bedford (and other children) can play with access, dignity, and joy.