CALHOUN, Ga. - Sydney Wellington could soon finally have a voice, years after hers was silenced by Rett syndrome.
"She's in there, she knows things,” says Shannon Wellington, Sydney’s mother. “She just can't, she's trapped inside her body."
Pediatric neurologist Dr. Daniel Tarquinio at Children's Healthcare of Atlanta specializes in Rett syndrome, a neurodevelopmental disorder that affects about 1 out of every 10,000 girls.
"So, children are born normal,” Dr. Tarquinio says. “They develop normally. They learn to sit. They learn a few words, they learn to use their hands."
But, when Sydney was still a toddler, she began losing all of that. At 20, she is unable to walk, use her hands to feed herself, and cannot speak. But, Sydney has a secret weapon: her eyes.
"One of the strengths of people with Rett syndrome is they have excellent eye-gaze,” says Dr. Tarquinio. “It's been described as unnaturally piercing. They will stare you down."
"So they can't talk,” he says, “But they can talk with their eyes."
That is exactly what Sydney is learning to do with this computerized eye-gazing device provided by Children's Healthcare.
"I think it's going to open up so many different avenues for her,” says her mother. “She's finally going to have her voice."
Learning to control the device -- using only her eyes -- is tough, but Sydney is making progress.
"She can tell me that she feels sick, she feels good, she feels happy,” says her mother.
That's key because girls with Rett syndrome often have painful complications, like broken bones and serious digestive problems, says Dr. Tarquinio.
"If a child with Rett Syndrome is in pain, all we can do is guess as to why they're in pain,” he says. “So, on a practical level, communication for families means, 'You're in pain. Where does it hurt?’"
Shannon Wellington says Sydney used the eye-gazing device to ask someone to lift her out of her chair at school. The person placed her on a beanbag chair, where she quickly fell asleep.
"She's able to tell you if she has a headache,” says her mother. “If she's hot, if she's cold."
She’s hoping Sydney will one day be able to communicate what she’s thinking.
"I would just like her to blossom and be able to have a freer conversation, and say what she wants to say,” says Shannon Wellington.