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The apps also offer a rich experience with bright colors, high-definition photos and crisp sound recordings that weren’t possible before mobile computing technology, Tobias said. But a potential downside exists when people start to think of the apps as a magic wand. Not every app will help every person, he said.

“I’ve been contacted by about 100 eager and enthusiastic parents in the last three or four months about things like this,” he said, “and if it doesn’t work out, they’re a little bit at a loss as to what to do next. We still need to do more to help professionals understand what’s available and what might be best suited for individuals.”

For the Paucas, who founded the Pitt Hopkins Syndrome International Network to meet and share information with other families, something as seemingly commonplace as a smart phone app has added inexpressible richness to their family life.

“He has the most positive attitude and the brightest smile,” Theresa said about Victor. “He teaches us something new every day about what we need to be thankful for.”



Pitt Hopkins Syndrome International Network: