Giving Thanks For Two Bonus Decades Of Life And Love

Correction Jan. 28, 2014

The audio of this story, as did a previous Web version, incorrectly says that most children with CHARGE syndrome don't live past age 5. It is more accurate to say that they don't live past infancy.

Lionel D'Luna, daughter Adrienne and wife Debra remember their daughter and sister Alexis, who died in 2012 of complications from CHARGE syndrome. i i

hide captionLionel D'Luna, daughter Adrienne and wife Debra remember their daughter and sister Alexis, who died in 2012 of complications from CHARGE syndrome.

Courtesy of the D'Luna Family
Lionel D'Luna, daughter Adrienne and wife Debra remember their daughter and sister Alexis, who died in 2012 of complications from CHARGE syndrome.

Lionel D'Luna, daughter Adrienne and wife Debra remember their daughter and sister Alexis, who died in 2012 of complications from CHARGE syndrome.

Courtesy of the D'Luna Family

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.

Courtesy of the D'Luna family/YouTube

Alexis' boundless energy was on display when she cheered with the Northwood High School squad, which she joined in 2004, in Irvine, Calif.

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