The Backstory

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A young woman finds her voice

Nineteen-year-old Alyssa Davilla has things to say. Until recently, no one knew. Davilla, who was born missing a large region of chromosome 5, voices only a handful of words.

Alyssa Davilla uses an iPad app to communicate by selecting words and phrases she wants to express. Her dog, Elmo, licks her feet to relax her as she talks with visitors. Max Aguilera-Hellweg photography.

Her gene defect produces profound neurological challenges, including seizures and autismlike symptoms, which hampers her ability to speak. Medical problems such as aspiration pneumonia have led to frequent stays at Lucile Packard Children’s Hospital Stanford; she’s monitored by several of the hospital’s physicians.

For years, Davilla’s parents, Monique Davilla and Matt Volkman, had few tools to communicate with her. She could say “food” and “water.” She could point to cards that said “Yes,” “No,” “Want more,” “All done” and “Want to play a game.” Beyond this tiny vocabulary, the family used a lot of guesswork.

Then, in May 2017, Monique Davilla heard about a speech therapist who focuses on patients with severe communication impairments. Her daughter had worked with other speech therapists, but this one was different.

“The first time Ali met Alyssa, she was able to tell me that Alyssa can spell,” Monique Davilla says. “I had no idea.”

The speech therapist, Ali Steers, who is in private practice in the Los Angeles area, helped Alyssa Davilla use an iPad application to augment her communication. A version of the Compass app organizes a large vocabulary into practical categories; users tap words and pictures to create phrases that are spoken by a recorded voice.

“I thought she was shy. She’s not; she’s actually pretty social, but she didn’t have a way of communicating.”

The use of the app has revealed surprises about Alyssa Davilla. This winter, when she had a cold, she could say that her head ached; she’d never expressed pain before. For the first time, she’s showing a sense of humor, sometimes deliberately answering questions wrong, then waiting, smiling, to see if anyone realizes she’s being silly.

“More and more, we’re seeing her personality come out,” her mother says. “I thought she was shy. She’s not; she’s actually pretty social, but she didn’t have a way of communicating.”

And she really wants to connect. On a recent afternoon, Alyssa Davilla met a visitor at the door of her family’s home in San Jose, California, holding a favorite jigsaw puzzle. “Fi, fi” she said, pointing to the fish on the puzzle.

In her home-school classroom, her longtime teacher chatted with her about what clothing to wear in different weather conditions. Via the app, she picked a blouse, pants and sneakers for a sunny day; a sweater, jeans and rain boots for rainy weather. She’s learning arithmetic, spelling and grammar. Her family hopes she’ll learn to write her thoughts and needs.

The app also helps make social connections: Questions about her gregarious dog used to fall to her mom, but now, Alyssa Davilla can play a recording that says, “I have a service dog and his name is Elmo.” She can tell people her favorite TV shows — Dora the Explorer and Blue’s Clues — or say if she wants space. During a recent hospital stay, when there was too much hustle-bustle in her room, she told the nurses, “I’m sick, I need to rest.”

How does it make her feel to be able to communicate this way? “Good, awesome, smart.”

After years of believing that her daughter’s ability to converse would always be limited, Monique Davilla is delighted by the change. “I’m so grateful,” she says. “I was told by so many speech therapists that my daughter didn’t have the cognitive awareness to communicate like this.”

Erin Digitale is the pediatrics science writer for the medical school’s Office of Communication & Public Affairs. Email her at digitale@stanford.edu.

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