iPhone App Opens World to Boy with Rare Syndrome

Photo: Proloquo2go

For the first seven years of his life, Andrew struggled to tell his mother, Beth Patitucci, when he was hungry or when he wanted to sit on her lap. On an almost daily basis, his family and teachers at school would see Andrew cry, bite on his thumbs and lash out as if in pain. But he was unable to let them know what was wrong.

Andrew, who at age 8 is the size of a 3- or 4-year-old, has Cornelia de Lange syndrome, a developmental disorder that affects communication and social interaction. It is characterized by low birth weight, slow growth, distinctive facial features and small stature.

But a new iPhone application Andrew uses on an iPod has opened the doors to Andrew's mind.

Proloquo2go, the best-selling medical and educational app of 2009, has created a lot of enthusiasm among speech language pathologists, parents and people struggling to communicate. For some, like Beth and Andrew Patitucci, of Dresher, Pa., the app has provided a pocket-sized alternative to bulkier communication devices at a fraction of the cost.

"This was something that was affordable enough for us that we figured we'd give it a try," Beth said. "And if it didn't work out, we knew at least we'd end up with an iPod out of it."

Typically, Augmentative and Alternative Communication (AAC) devices with similar capabilities cost between $5,000 and $8,000. Proloquo2go is available online in the App Store for $189.99. Packaged with an iPod or iPhone and other accessories, the total cost is usually between $500 and $600.

The device is relatively simple to program, said Samuel Sennott, the 31-year-old co-creator of Proloquo2go and a doctoral student at Penn State University. Users press on icons, words, and phrases to create messages. Those messages are read aloud by the Proloquo2go software.

Users typically have communications disabilities related to Down syndrome, autism, early-stage ALS, apraxia, aphasia and strokes, Sennott said.

The app has also allowed certain users to bypass the bureaucratic channels necessary to receive more expensive devices. In many cases, insurance companies will only cover one AAC device every five years, and the process of getting funding for those devices can take months.

"The fact that users can get it commercially by going to Best Buy, Wal-Mart, Apple retail stores or any other electronics store is a dream come true for me," said Sennott, who's been working with children in special education since he was 19.

Proloquo2go App Helps People with Disabilities Communicate

A simple trip to the mall allows Patitucci to maintain her son's AAC device. When other AAC devices break, she said, "you usually have to send them in somewhere, and then you're going days and even weeks without communication that your son is now relying on."

When Patitucci heard about the app last year, she immediately purchased an iPod and the Proloquo2go software. Andrew had tried other AAC devices but his hands were too small to hold them. He also had trouble navigating the layers of information needed to make a command on other devices.

Patitucci removed all the original programming options from her son's iPod and left only two icons for him to press: "I'm hungry" and "I want to sit on your lap."

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