Ten-year-old Irelynn has low mobility and is non-verbal. Thanks to pioneering brain-computer interface (BCI) technology, she is now learning to unlock a new level of independence. Irelynn was diagnosed with STXBP1 disorder, an ultra-rare genetic condition, when she was only 17 months old. Today, she’s able to move things with her mind — opening a new realm of exciting potential that was once thought impossible.
Irelynn’s journey with BCI technology began at the John McGivney Children’s Centre in Windsor, Ontario, where she participates in therapy sessions. In these sessions, she works side-by-side with the kind and gifted Susannah Van Damme, who is an occupational therapist. Susannah is the clinical BCI program lead at Holland Bloorview Kids Rehabilitation Hospital in Toronto. The BCI technology includes a shiny black headset. It’s equipped with dozens of circular sensors that detect the electrical signals emitted by Irelynn’s brain.
Using this technology, Irelynn is easily able to control a toy to play music by just picturing herself clapping. Specifically, she once taught software how to identify a specific command concept, Van Damme said. This incredible skill is a huge accomplishment for Irelynn and truly shows what the BCI system is capable of.
Developers still run into issues with the existing headsets, which are largely targeted at a grown-up audience. Van Damme said she was optimistic that technological breakthroughs would allow more appropriate devices to be developed for young patients like Irelynn. We have to make sure that each electrode lays down solid contact with her skull. This is very important for us to be able to get those signals,” she acknowledged. This process typically includes brushing hair back, as well as the addition of felt pads soaked in saline solution to boost conductivity.
The longer she goes through her training, the more possibilities there are for Irelynn to wield objects around her and interact with her environment in a unique way. Her father, Jeff, has written about how the BCI device has changed their family’s life even before Brody has received it. It’s just giving them something that they didn’t realize was feasible,” he added.
The potential effects of BCI technology are further magnified beyond Irelynn’s personal story. A recent $30 million donation from the Slaight Family Foundation aims to expand access to this groundbreaking technology beyond Holland Bloorview, potentially aiding many other children with disabilities. Jodi Fischer, who works with children using BCI, highlighted the broader implications of this technology: “They see a way that they get to control their environment in a way that they’ve never been able to do in lots of instances.”
Irelynn’s BCI training is in the early stages, both she and her caregivers believe working with a BCI is “very exciting.” She now has time to practice her craft on a daily basis. With every step forward, she will achieve more independence and a closer bond with her environment.
