Lionel D’Luna, Adrienne D’Luna Directo and Debra D’Luna

Alexis D’Luna had CHARGE Syndrome, a rare, life-threatening genetic condition that causes a number of birth defects. Alexis was intellectually disabled, legally blind and had hearing problems. She stood just under 5 feet tall because of deformities in her legs and back.

Many children with CHARGE don’t live beyond infancy, but Alexis lived to be 25. She died in her sleep in December 2012.

Her parents, Debra and Lionel D’Luna, came to StoryCorps with her sister, Adrienne, to remember her.

Originally aired January 24, 2014, on NPR’s Morning Edition.