“She attracted people wherever she went.”

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.

Image of
Recorded in
Recorded in Chicago, Illinois
To see a video of Alexis cheerleading as part of the Northwood High cheerleading squad, click here.

Music Info: "A Spire" by Tape from the album Rideau.
Produced by Yasmina Guerda
Facilitated by André Pérez
Read the Transcript
Click here for the transcript.