(Update: adding comment from Jackson’s mother and grandmother)
REDMOND, Ore. (KTVZ) — A Redmond baby who was born with a brain disorder that caused him to have seizures led to him undergoing surgery to remove half his brain.
Jackson Williamson was diagnosed with hemispheric megalencephaly and heterotopia. It’s a malformation that caused the left side of his brain to be larger than the right side, and abnormal gray matter and cysts throughout his brain.
“Very overwhelmed initially,” said Kaitlyn Williamson, Jackson’s mother.
Jackson was 3 months old when his mom Kaitlyn took him for treatment never expecting a devastating outcome.
“Going into the emergency room, really just thinking it was maybe a bad cold or something was hard enough and then to realize that it was seizures and It was just really scary…a lot of unknown,” Williamson said.
When medication didn’t mitigate the seizures, Jackson was life flighted Portland’s Doernbecher Children’s Hospital.
Doctors determined he was having up to 200 seizures a day. He was diagnosed with abnormal development of his brain, cerebral palsy and epilepsy.
“In the midst of the newborn days, we didn’t recognize that his right side was a little bit weaker and that was because the left side of the brain seizing so much, he didn’t really have a lot of control over his right side,” Williamson said.
Back on July 2nd, Jackson underwent a hemispherectomy, removing the left side of his brain to stop seizures from spreading from the unhealthy side of the brain to the healthy side. The goal was to allow the brain to reorganize and develop without continued disruption
Jackson is now 6 months old, and since the surgery, his seizures are down to about 11 a day.
“He is now opening his hand more on his right side. He’s gaining strength in his right leg. That’s all from movement,” said Cally Hampton, Jackson’s grandmother. He’s sitting up almost on his own, almost. And that comes from gaining strength in his spine and in his hips and in his neck
Hampton has learned through Jackson’s story a large head circumference, and weakness on one side of the body can be indicators of underlying issues
“It’s because of her gut that we’re here today,” Hampton said. “And I’m just hoping that maybe someone else might be in a condition where they need to listen to their gut and, you know, might make a big change and save their child.”
Jackson goes to therapy daily to strengthen his motor skills and enhance right side brain development. Even with all he’s been through his mom is optimistic about his future.
“He’s such a happy baby. He’s very social. He loves people. He loves making friends. When he smiles it feels like almost nonstop.”
Doctors tell Kaitlyn Jackson is expected to walk when he is older, but could have challenges with immunity and learning. Kaitlyn’s family has set up an online fundraiser to help with medical costs and therapy.
