‘Celebrate the inch-stones’: Central Oregon toddler with rare brain disorder defies odds, makes incredible progress
Claire Elmer
PRINEVILLE, Ore. (KTVZ) — Back in 2024, KTVZ News introduced viewers to a Central Oregon baby facing extraordinary challenges. Now, as he celebrates his recent 2nd birthday, he’s exceeding all expectations.
Jackson was born with a rare brain disorder called hemimegalencephaly, a condition that affects only a handful of children worldwide each year. The disorder caused severe epilepsy for Jackson, triggering more than 200 seizures a day.
When medications failed to control the seizures, doctors determined there was only one option. At just three-and-a-half months old, Jackson underwent a complex operation in which surgeons removed half of his brain.
“We tried I believe it was seven or eight different medications, and none of those really seemed to mitigate the seizures,” said his mother, Kaitlyn Williamson. “So they met with the surgical team and decided disconnecting and removing the left hemisphere was really our only option for relief.”
Before the surgery, Jackson’s family was warned he might never walk, talk, or eat on his own. But today, he’s proving he can, and will, defy the odds.
“A day with Jackson is amazing,” said Brandy Ridgway, a direct support professional who works closely with him. “He can give you a high five, he’ll give you knuckles. He’s just an amazing little boy. The health care system doubted him on a lot of things, and he has just blown them all out of the water.”
Jackson now spends his days in therapy, playing, and spending time with his best friend.
“I was like, I don’t know if I like babies that much,” said Baylee Ridgway, Jackson’s best friend and Brandy’s daughter. “But then he gave me a hug and I was like, ‘Oh, I love this kid so much.’ And I’ve been going to work with her ever since.”
While Jackson has made remarkable progress, his journey isn’t over. He is now facing a new challenge: a gastrointestinal condition. His family is preparing for the possibility of a feeding tube as they search for specialists outside of Oregon.
Through it all, his mother says support from their medical team and community has helped them stay strong.
“Modern medicine has quite literally saved his life and given us the opportunities that we have today,” Williamson said. “We have a lot of really incredible people on our side, and they celebrate every—what they call inch-stones rather than milestones—every little thing he’s doing that we never thought was possible.”
As Jackson continues to grow, his family and care team say each new step forward is another reminder of how far he’s come, and how much hope his journey brings to others.
“Disability is nothing easy to go through, but you should still persevere through it, try your hardest, and look on the bright side of the world,” added Baylee.
To help with out-of-pocket medical costs and speciality care not available in Oregon, a fundraiser has been started to support Jackson and his family. You can visit the GoFundMe page for Jackson’s journey to learn more.