This technology is helping young girls with a rare syndrome communicate

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.

Children with Rett syndrome didn't have a truly effective means to communicate.

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.

Image: Tobii Dynavox

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."

"With eye tracking, it shows the fact that they are cognitively there."

Rudnicki says Rett syndrome can strip away a child's ability to actively connect with their family. But this technology can bridge that gap.
"I can't tell you how many families have told us that. They have a sense of humor and can say how much they love their family," she says.
In April, Tobii Dynavox co-hosted an event with Lawlor and the Rett Syndrome Association of Ireland for teachers, parents, and speech and language therapists. The event focused on how they can use eye-gaze technology to teach and interact with their children, especially because there can be an extensive learning curve.
"There are some kids who get it in 10 seconds, and there are some kids who take a year or 18 months to really develop knowledge of what they're doing and the skills required," explains Hector Minto, Tobii Dynavox's director of global services and education, and one of the event speakers.

"There's understanding what you're doing, and then there's physically learning to coordinate your eyes and make them work as a pointer," Minto says.

At the Tobii Eyegaze event, one family brought their young daughter, who has used an eye tracker for more than a year. Her father told Mashable that after using the technology for 18 months, and with the help of her teacher, she's now developing further communication skills to help her interact with her family and other kids.

When assistive technology isn't accessible

Not everyone has the opportunity to experience such success, however. One of the aims of the many Rett syndrome organizations around the world is to help make this technology more accessible to children and their families.
The cost range is broad: A basic eye tracker that can be used with a regular laptop for in-home use can cost around $200. Tobii Dynavox's most robust system, the I-Series+, which includes a monitor and built-in software and can be used in outdoor settings, costs more than $12,000.

"Having a child with disabilities is very expensive; it just takes a lot of money for all the extra needs."

"Unfortunately, it was cost-prohibitive," Lawlor says. "It still is very expensive, but through a lot of hard work, I was able to purchase one myself and show [Nathalia’s] school."
For some families, it's still too expensive, he says — especially when you factor in day-to-day costs of living with a disability, whether it's medication, education, transport or adapting your home.
"Having a child with disabilities is very expensive; it just takes a lot of money for all the extra needs," Lawlor says.
Making teachers and therapists aware of the technology, and proving that it works, is just one step. Lawlor hopes that governmental health care and education departments, in Ireland and abroad, will see the benefits of eye tracking for children with Rett syndrome and many other complex cognitive conditions — and ultimately fund the tech for schools and caregivers that need it.

But cost isn't the only issue. Because Rett syndrome is so rare, it's more difficult for families to get the care and services they need.

That's according to Elizabeth Halford, who works with UK charity Cure Rett and blogs at Grace for Rett about her daughter Grace, who has Rett syndrome. She says there are many hurdles that families have to clear to get access to the technology, like having to prove their children really need it.
The condition is still misunderstood, Halford says. She claims that most health services with funding for eye-tracking technology tend to distribute it to people with more prevalent conditions, such as amyotrophic lateral sclerosis (ALS) and cerebral palsy.
A spokesperson for the National Health Service in the UK, where Halford lives, said that funding for augmentative and alternative communication (AAC) devices is based on the "exact needs of the individual," but could not comment on cases of Rett syndrome.

Not a catch-all solution

 

 

While many eye gaze users have seen positive results, these devices are not a guaranteed solution to the communication barriers children with Rett syndrome face.
Dr. Daniel Tarquinio, a child neurologist at Emory University in Atlanta, Georgia, says that parents and teachers need to adjust expectations, as the technology cannot fully solve a child’s communication restraints. Families often put too much faith in devices too quickly, he says — using eye-gaze technology, then, is as much a learning experience for families as it is for the child.

"Just like sign language would be introduced to a deaf child, eye gaze should be introduced very early."

"There's no good way to verify that what [a child using this technology] actually did is what they meant to do," Tarquinio says. "Often … families get very excited early on. They try [the devices] for a while, and due to frustrations, they put them in a drawer," he says.
Every child is different, so every experience with the technology is going to be different, too. As a result, Halford believes eye gaze as a means of communication should be introduced to children like a new language.
"Just like sign language would be introduced to a deaf child, eye gaze should be introduced very early," she says.
Despite these challenges for children with Rett syndrome and learning how to use assistive technologies, Tarquinio says eye gaze still has great potential.
"I still have high hopes for this," he says. "I think the technology has the potential to benefit [children]. It's just that, [for] families that don't have guidance or have unrealistic expectations, those expectations will not be met."


It's still early stages for this technology — education, awareness, price reduction and funding are all necessary for affected families to get the help they need.

Rudnicki, of Tobii Dynavox, says getting the word out is the crucial first step.
"We've set our mission out for awareness," she says. "Once we can hit that critical mass ... the next big thing for us is price reduction. That's obviously very important — we realize that."

"It's all about giving children their voice."

In the meantime, Tobii Dynavox is making additional products and software available at different price points to increase accessibility.
For the Lawlor family, the benefits of eye gaze have been profound for Nathalia, amplifying her voice and helping her establish her identity. They just hope more children and their families can benefit from the technology, too — and soon.
"It's giving them a right to communicate, and that's everyone's human right — to say how they feel, what they want, the basic fundamentals of life," Lawlor says.
"It's all about giving children their voice."