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John's Radiothon Story

When Kurt and Karly learned that their yet unborn baby had suffered a stroke in utero, they knew that the future for their new family would be uncertain. As young parents, they quickly learned that there would be no playbook for how their son would grow and learn.

When John was two years old the family relocated from Saskatchewan to Calgary where they found a strong community of other parents of children with CP. They were also pleasantly surprised by the abundance of support systems available for them at the Alberta Children’s Hospital.

As John grew, the family worked with his care team to find the right balance of medications to control his seizures. When they were introduced to Dr. Adam Kirton, his meds were adjusted and since that time he hasn’t had a single seizure. Last November, John had a feeding tube inserted when it became clear that his growing body wasn’t getting enough nourishment orally. While it was a difficult decision to send him for a “optional” surgery, John is stronger for it. The family is very grateful for the entire team at the Alberta Children’s Hospital who make it so comfortable for John when he visits various clinics around the hospital.

Last year, Dr. Kirton mentioned to Kurt and Karly that their bright boy would be a good candidate to try some new technology he and his research team were working with – Brain Computer Interface (BCI). BCI has the potential to engage children like John – who are intellectually capable but unable to communicate – in learning and play. The software and technology recognizes changes in thought patterns via a non-invasive electroencephalogram (EEG) and transmits those signals to control devices such as computers, phones, TV remotes and more.

At just eight years old, John is the youngest person in the world to be using BCI technology. Kurt and Karly were thrilled to see John control his environment like never before by using BCI to operate a computer or remote control car. Since mastering BCI, one of John’s favourite activities is painting. With the power of his brain, John manipulates a robotic sphere to roll through a palette of paint to create colourful works of art which have garnered attention from across North America. Thanks to donor support, John has been equipped with BCI technology for him to use in his home which was very helpful when the pandemic limited access to the hospital last spring.

BCI has given the Soparlos great hope for John’s future independence. The opportunities for BCI are endless and they are grateful that community support has opened up a world of possibilities for their son.

© 2021 Global News, a division of Corus Entertainment Inc.

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