Abby Congram is 14 years old, and she’s never said a word.
She suffers from Rett Syndrome: a rare disorder that affects one in every 10,000 individuals.
The neurodevelopmental condition, which occurs almost exclusively in females, is caused by the mutation of the MECP2 gene on the X chromosome. It stunts growth, affects speech and coordination, and is characterized by repetitive hand movements.
“She would go up to people and smile, and they would kind of look at her and not know what to do,” said Abby’s mother Karen Congram.
Rett Syndrome is characterized by normal development until six or 18 months of age, when delay or regression occurs, which is typically when children are diagnosed.
While Rett Syndrome is not degenerative, all children and adults living with the condition need full-time assistance.
But a new technology has helped Congram find a voice.
Through the use of the “eye gaze” computer, she has found a way to convey her thoughts and emotions.
Unlike a touch screen device, the eye gaze computer works by picking up retinal movements. Staring at a word icon onscreen triggers the computer to say the word out loud.
“This technology has been life-changing, it’s been that much better,” Karen Congram said.
Terry Boyd, president of the Ontario Rett Syndrome Association, said she hopes the technology will help individuals with the condition be able to say if their medication is working, and convey how they are feeling.
“It will help them to be able to share their desires, their needs, and also I hope will help us be able to care for them medically,” Boyd said.
And for Congram’s friends, the use of the computer has allowed them to get to know her better.
“I would have never guessed that her favourite artist of music was Lyle Lovett before,’ said her friend Sarah Nemeth.
With a report from CTV’s Peter Akman
