This technology is helping young girls with a rare syndrome communicate

September 04, 2016
John Quinn

When 13-year-old Nathalia Lawlor was born, she seemed perfectly healthy, moving and babbling like any other baby. But at around six or seven months, she started to lose her coordination and ability to move. Once able to grasp small objects, she could no longer pick up pieces of food from her plate.

Nathalia was diagnosed with Rett syndrome, a rare neurological disorder that affects girls almost exclusively. Doctors said she would never be able to speak or walk again.

Rett syndrome occurs in 1 in every 10,000 female births globally, though there have been even rarer cases with boys (according to the National Institutes of Health, however, most boys with the condition die in infancy). The disorder typically manifests when a girl is 6-18 months old, and it inhibits many brain processes, including cognitive, motor and sensory functions. Those living with Rett syndrome are, like Nathalia, often unable to talk or use their hands, and in many cases they need to use a wheelchair.

Just a few years ago, children with Rett syndrome didn’t have a truly effective means to communicate, says Nathalia’s father, Joe Lawlor, who founded the Rett Syndrome Association of Ireland.

“Up until recently, we were using basic ‘yes’ and ‘no’ cards to communicate with [her],” he tells Mashable.

This rudimentary means of communication didn’t allow much room in terms of growth and development, preventing Nathalia from expressing herself and showing off her personality.

But Lawlor’s family found something that could help. They turned to eye-tracking technology for an answer that might help Nathalia reclaim her ability to communicate.

Tobii Dynavox, a company based out of Pittsburgh, Pennsylvania, develops hardware that tracks a user’s eye gaze and movements. This allows children with physical disabilities to operate a computer screen and communicate through different apps, moving their eyes between pictures and focusing on icons and commands to select them.

Beginners can start by playing simple games — popping balloons, for example — but they’re encouraged to grow toward more significant uses. With one app, Nathalia’s computer is connected to the lights in her home, so she can switch them on and off without assistance.

Ultimately, the technology gives children with Rett syndrome greater independence and control.

The potential to change lives

For many with Rett syndrome, eye-tracking or eye-gaze technology is a means to have their voices heard.

“When I first met a family with Rett’s, it was about seven years ago. There was no way to communicate,” says Tara Rudnicki, Tobii Dynavox’s North American market president. “With eye tracking, it shows the fact that they are cognitively there. They understand what’s going on, but they need something to interact with.”

To read the rest of this article, published in Mashable, please click here.

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