Classmates help Scarlett Dekorte drive with her eyes

FERGUS – Scarlett Dekorte’s world opened up a little bit more thanks to the generosity and ingenuity of two of her classmates.

And it has her mother Melody Dekorte excited about the good these students could do in their futures.

Scarlett has Rett syndrome, a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, such as losing the ability to speak and walk, and difficulty eating and breathing. It has progressed to the point where she often has seizures.

But technology is an amazing thing, and Scarlett has a Tobii Dynavox eye gaze speech generating device. By looking at a button on the screen, she can answer simple questions and express how she’s feeling – hungry, tired, cold, hot, funny.

She can even alert her mother when a seizure is coming. She’s a smart girl, her mother said.

“It’s like she’s trapped in her body. But this allows her to open up her world,” Melody said.

Last June, during National Accessibility Week, Scarlett’s Grade 8 teacher at Elora Public School asked her students to think of something they could do to improve accessibility in the world.

Rayyan Sajid and Owen Erickson decided to build a robotic car that Scarlett could control on her own.

It looks like a regular remote-controlled car, but instead of a joystick, it’s connected to Scarlett’s eye tracking device and controlled by her.

Their shop teacher allowed the boys to use any spare parts in the shop room and they 3-D printed other parts.

“We spent some time in there (the shop room) building it,” Sajid said. “It was a trial-and-error kind of thing.”

They also figured out some coding and set up a camera in the car so they could share information with Scarlett’s Tobii screen.

And it worked. Scarlett was able to move the car using her eyes. 

It was empowering for her and the boys felt pretty good about what they had done.

“But that’s not the end of it,” Melody said in an interview. “Scarlett kept asking to drive a car,” so over the summer the boys built another one.

Without access to the school’s shop, they had to do some troubleshooting and build more parts with the 3-D printer. They handed off the project to each other over the summer, working around family vacations and other commitments.

“It was mostly Rayyan’s work,” Erickson said. “He’s excellent at coding. I’m more of the builder. There were so many puzzles to figure out.”

They brought the rebuilt device to Scarlett’s home just a few weeks ago and she was able to drive it in the kitchen.

Although she was exhausted by a series of small seizures that day, “she perked right up and pushed through the fatigue because this meant a lot to her,” Melody said.

“Options for fun in her life are extremely limited these days, which is why it meant so much to her. The kindness and brilliance of these boys impressed me.”

“It was the happiest moment when she got the robot to work,” Erickson said. 

“She said ‘hurray’ and ‘clapping’ (through her Tobii device) and that made me feel accomplished. It made me feel like I have the power to change the world with this idea we had.”

“I had been thinking of ways I can help people out. This was the first time I created something,” Sajid said.

The boys have since moved on to high school, and are excited about the clubs, classes and opportunities there.

“People think to help someone with a disability needs a grand gesture,” Melody said. 

“Sometimes it does but often it does not. It seems like a passion project for the boys. For Scarlett it brought so much joy. And that brings joy to me.”