Alexis D'Luna was born with CHARGE syndrome, a life-threatening genetic condition. She was intellectually disabled, legally blind, had hearing problems and stood just under 5 feet tall because of deformities in her legs and back.
She also had boundless energy, her family recalls during a visit to StoryCorps. "She would wake up and ask what was on the agenda for the day," says her older sister, Adrienne D'Luna Directo. "And once you got out of saying the things you had planned, she would say, 'And then?' "
Alexis loved cheerleading. She joined her high school squad in 2004. At football games, she would be "doing kicks, even though it was only 6 inches above the ground," says Alexis' father, Lionel D'Luna. "You just marveled at that energy."
"She was charismatic," says her mother, Debra. "She attracted people wherever she went."
Many children with CHARGE syndrome don't live past infancy, but Alexis lived until she was 25.
"Every morning when I wake up, I give thanks for the day, and then I say, 'May I use it the way Alexis did,' " says Lionel.
"If you could talk to Alexis right now, what would you want to say?" Adrienne asks her father.
"We are so proud of you and all that you have taught us," Lionel says. "We are what we are because of you."
Audio produced for Morning Edition by Yasmina Guerda.
RENEE MONTAGNE, HOST:
It's Friday, and that means it's time now for StoryCorps. Today, we'll hear about Alexis D'Luna. Alexis had a rare genetic condition called CHARGE syndrome, which leads to a number of birth defects. She was mentally disabled, legally blind and had hearing problems. She was very short because of deformities in her legs and back.
Most children with CHARGE Syndrome don't live past 5 years old, but Alexis lived into her mid 20s. Her parents, Debra and Lionel D'Luna, came to StoryCorps with her sister Adrienne, to remember her.
LIONEL D'LUNA: From the time she woke up to the time she went to bed, she was always doing something.
ADRIENNE D'LUNA DIRECTO: She would wake up and ask what was on the agenda for the day. And once you got out of saying the things that you had planned, she'd say: And then?
LIONEL D'LUNA: Yeah.
LIONEL D'LUNA: 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 6 inches above the ground, and you just marveled at that energy.
DEBRA D'LUNA: 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...
DIRECTO: Even weird stuff, like bald heads and crooked teeth.
DEBRA D'LUNA: Yeah, crooked teeth.
DIRECTO: Let's talk a little bit about Alexis' death.
DEBRA D'LUNA: Yeah, um...
LIONEL D'LUNA: 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, Da-Da, 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 say, 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.
DEBRA D'LUNA: She was to be a bridesmaid, of course.
LIONEL D'LUNA: 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.
DIRECTO: I'm glad I had gotten to see her in that bridesmaid's dress.
LIONEL D'LUNA: 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.
DIRECTO: If you could talk to Alexis right now, what would you want to say?
LIONEL D'LUNA: We are so proud of you, and all that you have taught us. We are what we are because of you.
(SOUNDBITE OF MUSIC)
MONTAGNE: Lionel and Debra D'Luna with Adrienne D'Luna Directo, remembering their daughter and sister Alexis, who died in 2012. The StoryCorps podcast is at npr.org.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.