The diagnosis came when little Victor was just 2 1/2 years-old. The North Carolina boy was afflicted with a rare developmental and cognitive condition that causes delays in speech and motor skills called Pitt Hopkins Syndrome, of which there are approximate 180 cases worldwide. Mom and dad, who had noticed something was wrong at one year just as Victor was only starting to sit up, were heartbroken.
“It shattered our world,” remembers Paul Pauca, Victor’s father, a Peruvian-born software engineering professor at Wake Forest University in Winston-Salem. “It got dark and very, very negative.” But his wife, Theresa, a special education teacher, helped Pauca see things more clearly, telling him he had the option of “becoming bitter or better” and that waiting for him on the other side was his baby boy.
It was a message Paul took to heart—and directly into his classroom at the university, where he enlisted his students to help build an iPhone app for kids like Victor, whose condition also caused a delay in his speech. Pauca understood the need: previous devices for children with communication challenges were expensive—ranging in price from $300 to upwards of $8,000—and impersonal.
So his team developed the Verbal Victor app, which now sells for $6.99 in Apple’s iTunes store, and allows the child to hear familiar voices talking to him. The app shows pictures in the form of buttons on mobile devices. When a child touches the picture of, say, a swing, a recorded voice, usually that of their parent or a sibling, says a word or a sentence such as: “I want to play.”
“One of the features I really love is that parents can customize it with their own voices so it doesn’t have a generic, robotic voice,” says Pauca. The recordings can also be made in any language, says Pauca, “which means I can also talk to Victor in Spanish.”
In the four years since Victor’s diagnosis, and since the app first hit the market, Pauca’s life has been completely transformed. On a new professional course as an international advocate for Pitt Hopkins, he is now also a developer of mobile apps for children and adults with disabilities. “Victor brought meaning and purpose to my work,” Pauca says. “My wife and I have started a foundation. And my daughters are becoming leaders in disabilities and trying to change the world in their own way.” In fact, philanthropy runs in Pauca’s family. His father is a retired mechanical engineer who has created 14 libraries for indigenous communities in Peru, and his mother is a social worker.
Victor, who finally learned to walk at age two, now spends his afternoons riding his tricycle and playing on his backyard swing set. ”He’s an extremely curious little guy,” says Pauca. “He’s very lively and social. And he loves having books read to him.”
Meanwhile, the communication tool his Dad named after him has helped prepare Victor to engage with the world around him. “He’s now pointing at himself and then pointing at what he wants,” says Pauca. “Verbal Victor has taught him that if you touch this button, something you want is going to happen. It motivates him to try and go to the next level, to try and say it or to click.”