Wake Forest University computer science professor Paul Pauca wanted what most fathers take for granted — the ability to easily communicate with his son.
Pauca’s 6-year-old son Victor was born with Pitt-Hopkins syndrome, a rare genetic disorder affecting a gene that plays a crucial role in the development of the nervous system and the brain. Children who have Pitt-Hopkins are unable to speak. Victor’s face expresses what he can’t say in words.
“He is a tremendously self-motivated child who doesn’t understand the concept of ‘I can’t,'” Pauca told an audience of more than 1,000 at Wake Forest. Among the presenters at the Feb. 25 TEDx Wake Forest University event in Winston-Salem, North Carolina, Pauca was the only one with a health IT product. The event’s theme was “innovation.”
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A Wake Forest professor since 2002, Pauca’s research includes technologies that address disabilities. Victor’s condition led to the intersection of Pauca’s personal life with his academic endeavors. Pauca led some of his students on a class project with real-world implications: developing a mobile app that helps people with disabilities communicate. And thus, “Verbal Victor” was born.
Several communication devices already exist to help those who have speaking disabilities. But many of them do an insufficient job communicating, or they’re very expensive, Pauca said. These days, most people routinely carry with them powerful computers with an array of capabilities — their smartphones. With that hardware readily available, Pauca’s students focused on developing software. Verbal Victor works on Apple’s iPhone, iPad and iPod Touch.
Victor used to signal what he wanted by pointing. Now, he points to specific images that appear on a mobile device. Point to a toilet and Verbal Victor chirps, “I want to potty.” Point to a plate of crackers and the app says, “I want a snack.” Parents can program Verbal Victor to respond in their voices, so their child isn’t hearing an unfamiliar robotic voice. And Verbal Victor is customizable by allowing a parent or other administrator to add, modify or delete content.
Verbal Victor launched on Apple’s app store in 2010. Pauca says nearly 3,000 copies of the $6.99 app have sold worldwide. Not all of those apps are used by children with Pitt-Hopkins syndrome. Pauca said an estimated 2.5 million to 4.7 million people in the United States have some condition that severely affects their ability to communicate. Verbal Victor is being used by people who have cerebral palsy as well as other disorders. Pauca said it could also be used by patients who have brain injuries or other conditions that affect communication abilities.
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Pauca hasn’t stopped innovating. Work is under way to further take advantage of newer mobile device features. The Siri feature on the iPhone4S suggests possibilities for Verbal Victor that include the ability to predict what a user needs. And cameras on the devices might offer another tool for Verbal Victor. A patient with amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease, might not be able to point. But cameras could be used to pick up some other signal from the user.
“If Victor could say anything, he would say ‘we can,'” Pauca said.
