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.
Click here for the transcript.
Adrienne D'Luna Directo (ADD): She would wake up and ask what was on the agenda for the day, and once you got out of saying the things you had planned, she would say, "And then?"
LD, ADD, and Debra D'Luna (DD): "And then?"
LD: And mom had this calendar for the month. The moment it was the end of the month, she wanted mom to do the next month's calendar. You know, at the football games, she would be cheerleading, doing kicks even though it was only six inches above the ground. And you just marveled at that energy.
DD: She was charismatic. I mean she attracted people wherever she went, and she was unabashedly a fan of whatever she was a fan of. For example, street artists.
ADD: Even weird stuff like bald heads and crooked teeth.
DD: Bald heads, yeah, crooked teeth.
ADD: Let's talk a little bit about Alexis's death...
LD: Yeah, um... On the evening of the 14th of December, as I was tucking her into bed she jokes with me and says, "I'm going to climb into your mouth, Dadda, and give you a pink polish." You know she had been to the dentist for a tooth cleaning where they use a pink compound, so she was joking me about that. So I said, "You silly girl," and I kissed her and went to bed.
I woke up at 8. And usually on a Saturday morning Alexis comes into our bed but she hadn't. So I immediately went to her room. And then I opened the door, and I didn't hear anything.
She had died somewhere in the middle of the night. The cause of death is listed as complications from CHARGE syndrome. And I had to call you and let you know two weeks before your wedding.
DD: She was to be a bridesmaid of course...
LD: All the bridesmaids had strapless dresses, but Alexis's body would not allow that to be so mom had put straps on them for her. She had tried it on just a couple of days before.
ADD: I'm glad I had gotten to see her in that bridesmaid's dress.
LD: You know every morning when I wake up, I give thanks for the day, and then I say, "May I use it the way Alexis did."
ADD: If you could talk to Alexis right now what would you want to say?
LD: We are so proud of you and all that you have taught us. We are what we are because of you.