New technology key to releasing kids who are ‘locked in’ their bodies

"It's been a gift, like a real blessing," Maggie Facca, mother of Nina Facca.
Click to play video: 'New technology key to releasing kids who are ‘locked in’ their bodies'
New technology key to releasing kids who are ‘locked in’ their bodies
WATCH: Funds raised from the Country 105 Caring for Kids Radiothon are helping to change lives. One family is sharing their story about how the Brain Computer Interface has opened a whole new world of possibilities for a young Calgary girl with severe cerebral palsy. – Feb 3, 2022

Nine year old Nina Facca is a happy, smart, kind and loving kid.  But when it comes to playing her favorite video games, the grade 4 Calgary girl doesn’t let anyone or anything stand in her way.

“She’s very competitive,” said Maggie Facca, Nina’s mom.

“She’s beaten us a pile of times,” added dad Dario Facca.

Beating mom and dad may not seem like much until you consider Nina, who has a severe form of cerebral palsy, is non-verbal, can’t walk, can’t sit on her own, nor can she feed or dress herself.

So when she plays computer games with her family, she uses only her mind to control the mouse and the actions on screen, thanks to technology called brain computer interface (BCI).

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Dr. Adam Kirton, a pediatric neurologist at the Alberta Children’s Hospital (ACH), said BCI isn’t new technology per se, but that the Calgary hospital is one of only a few in the world that is using it to create programs dedicated to children specifically.

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Calgary grandmother rallies around radiothon to help bring in better neurosurgical equipment

“BCI is technology that can sample your brain activity,” Kirton explained. “And if we intentionally change the thoughts in our heads, we can change our brainwaves.

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“If you continuously send that information to a smart computer and you train that computer to recognize when you’re changing your brainwaves with a thought, that computer could then use that thought to do something, to control the environment to perhaps move a cursor on a computer or click a button or move a wheelchair.”

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“Think about trying to press a key on your keyboard. Just thinking and trying to make it move without touching it. It’s pretty impressive she’s able to do that,” Dario said. He also mentioned that he and his son have also tried BCI, and struggled to make it work with any sort of proficiency.

Nina, on the other hand, impressed with her first try with it.

“We went the day for the trial and Nina was able to turn on a disco ball and make it go. That was super cool,” said Maggie. “But the funnest part was when she was able to turn on a ghetto blaster and played Mamma Mia, which is her favorite. ABBA, she loves it.

“We were all dancing. It was like a dance party.”

Click to play video: '2022 Caring for Kids Radiothon'
2022 Caring for Kids Radiothon

The Facca’s said BCI has been life-changing for their daughter, who they describe as being “locked in” her body.

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“We know she’s super smart,” said Maggie. “It’s her body.”

“This (BCI) just provides her with a way to communicate with us but have some freedom for her to make her choices and have fun with,” Dario added.

The Facca’s say the feel fortunate to be part of the BCI program at ACH.  Nina has been allowed to take and keep the technology and the Facca’s are hoping other kids who are also “locked in” their bodies will be afforded the same opportunity.

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They may get their wish.

Some of the money being raised during the 19th annual Country 105 Caring for Kids radiothon in support of the Alberta Children’s Hospital Foundation has been marked to purchase additional take-home BCI kits for other children in southern Alberta.

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“I can’t say enough how essential the community support has been. We’ve been doing research like this for many years at the Children’s and the support from the community is just is just unwavering,” said Kirton.

Added the Facca’s, “These kids are very fortunate thanks to the generosity of Calgarians to have these devices and not just have them at the hospital, but for people to have these in their homes, it’s been a gift, like a real blessing.”

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