‘It’s been a game-changer’: 4-year-old with rare condition lets her eyes do the talking

Mia Polacek may not be able to speak with her mouth, but the 4-year-old from Round Lake has a voice, thanks to technology that lets her eyes do the talking.

Mia was born with Edwards’ Syndrome, a chromosome disorder otherwise known as Trisomy 18. Similar in nature to Down syndrome, the disorder means Mia has three copies of chromosome number 18 instead of two, leaving her with a range of special medical and developmental needs.

When Mia was born, parents Jeanna and Robert Polacek were told to expect the worst — even if their daughter survived beyond a week or a month, she had only a 10% chance of making it to her first birthday.

“We were told that she wouldn't know us, that she would essentially be a vegetable,” Jeanna said.

But the Polaceks weren’t about to give up. They were only beginning to fight. They found other Edwards’ Syndrome families on social media and eventually co-founded the nonprofit Edwards’ Syndrome Association.

“We were finding all kinds of kids and even some adults that were living and thriving with the same genetic condition,” Jeanna Polacek said.

Through the Edwards’ community and Mia’s school — the Laremont School in Gages Lake — they found the TD Snap communications platform. A device uses eye gaze technology that tracks where a person is looking on a computer screen.

Through her eyes, Mia can speak messages and express emotions and physical states, like “bored” and “hungry.” It also lets her tell her 2-year-old sister, Madison, that she loves her.

Her ability to use the device impressed staff at her school so much that they nominated her for an Infinitec North Assistive Technology Coalition’s Outstanding Student Technology Award. The awards recognize students who excel in their use of assistive technology.

Mia joined other students at an April 18 ceremony in Palatine to receive the award.

Mia's teacher, Jill Schwarz, and speech pathologist, Laurie Johansen, said in a joint statement they are proud of her accomplishments.

“Mia has captured the essence of how technology is so important to kids with severe medical needs. The eye gaze technology has opened up her world to communicate with family, friends, and school personnel,” they said.

Jeanna acknowledged the technology allows Mia to let out her “sassy” side, like when she tells her teachers that she’s bored during circle time. But it’s also allowed her to make her parents aware of concerning health issues, such as when she’s suffering from acid reflux.

Before her parents found the technology, communicating with Mia involved a lot of guesswork.

At first, the Polaceks attempted to have Mia use a touch device to express herself, but she had difficulty isolating her fingers.

“You could tell that she was trying to communicate with her eyes,” Jeanna said. “She would look at something and stare at it. It was just clear that she was trying to talk to us with her eyes.”

Now, she is starting to string sentences together using her eyes.

“It’s been a game-changer,” said Robert Polacek, recalling a time when he came home from work and Mia greeted him and asked him how he was. “It’s given her a verbal voice that she doesn’t have, (but) that we know she has.”