An Ontario father says his daughter with autism spectrum disorder is making “fantastic” progress two years after starting the world’s first treatment that involves sending electrical signals to her brain.
Nine-year-old Ellie Tomlyanovich from Barrie, Ontario. has struggled with severe and dangerous self-injurious behavior. But in December 2020, she became the first patient to enroll in a study to see if deep brain stimulation could help her control her self-injurious behaviors, a therapy that proved a remarkable success.
“I can’t put into words what it’s like for us, just knowing that she knows what’s going on,” father Jason Tomljanovich said in an interview with CTV’s Your Morning on Friday. “It’s just amazing to see how much she’s improved in the last six months.
Tomljanovic said one of the biggest changes was her ability to express her emotions as well as communicate with her parents.
“So much has changed for us. Now he tells us what he needs. For example, if she’s hungry, she’ll go into the kitchen … open the fridge and pick out the fruit she wants or rolls — — her favorite. It’s just unreal,” he said.
Ellie’s parents spent up to 10 hours a day trying to keep her from harming herself, keeping her down and even resorting to sedatives and antipsychotics. Now they can spend time walking and swimming with their daughter.
“We can take her for walks. This year we have a swimming pool for Ellie and she has been there all summer. She loves to go to the pool and it just opened up our lives and more things that she can do and that we can do,” Tomljanovic said.
The treatment works by sending a small electrical current to cancel circuits or regions in the brain that doctors think are not working properly. Doctors had to implant two electrodes in her brain, connected by wires under the skin to a battery. In October, her battery was replaced with a rechargeable one that attaches to a custom vest made by a local seamstress.
“It’s been a bit of a work in progress,” Tomljanovic said. “It took about a month or so to get her used to wearing the vest. But now, every day, she has no problem dressing it up. She knows what time she has to go on and she does a fantastic job.”
Next year, Tomljanovic says she’s most looking forward to getting back to the pool with Ellie when the weather gets warmer.
“You see her smile and bounce around and it’s just unreal how much she loves the water and I’m looking forward to it.”
Watch the full interview with Jason Tomljanovic at the beginning of this article.
With files from CTV National News medical correspondent Avis Favaro
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