February 21, 2023
Patient Story

Rett Stories: Lucy

Rett syndrome patient Lucy riding a horse

Lucy, a 14-year-old living with Rett syndrome, and her parents, Matthew and Anna, share their journey. It is a story of joy and hope, of strength and dedication, but mostly it is a story of love.

Matthew and Anna have worked tirelessly to surround Lucy with an enriched environment that includes a community of educators, therapists and others who share their commitment to help Lucy “be the best Lucy she can be.” Their resolve has taken Lucy to high school, mountain-climbing, skiing, horseback-riding – experiences any child might have.

“Every time we see her do things like this, our world has opened up what’s possible. We don’t know what comes next…but her spirit is limitless.”
Matthew, Lucy’s Dad