After a brain tumor diagnosis and daily seizures, 10-year-old Grayson saw seizures end after epilepsy surgery at Norton Children's Neuroscience Institute.
By: July 20, 2026
After a brain tumor diagnosis and daily seizures, 10-year-old Grayson saw seizures end after epilepsy surgery at Norton Children's Neuroscience Institute.
July 20, 2026
Estimated reading time: 6 minutes
Grayson O’Barr is a fifth grader at Holy Spirit Catholic School in Louisville who says he “was born to play sports.” Soccer, swimming, track, basketball — if there’s a team he can join, Grayson is all in.
But in 2022, when Grayson was in first grade, something strange started happening to the normally active child. He would immediately stop whatever he was doing, cover his nose, and tell his mom he smelled something bad — even though no one else could smell anything.
“His pediatrician wasn’t initially concerned, but the episodes became harder to ignore over the following weeks,” said Grayson’s mom, Storey.
They happened during swim practice, during school and at home. Then, during a flag football game, Grayson had multiple seizures and was rushed to the emergency room.
Doctors admitted him that night and found he had epilepsy. The next morning, the neurology team at Norton Children’s Hospital confirmed the results of an MRI: Grayson had a brain tumor.
“I was sad, and I was mad, and I was scared,” Storey said. “So, I just told myself, OK, I’m now Grayson’s advocate. What are we going to do? Who do we need to meet with next?”
Addressing Grayson’s tumor came first: It was identified as a low-grade glioma, and his care team, led by Mustafa Barbour, M.D., pediatric oncologist at Norton Children’s Cancer Institute, started chemotherapy.
Grayson completed 58 weeks of treatment, which was stressful for his parents, David and Storey, and his older sister, Emery, who was also in elementary school and trying to understand her little brother’s illness.
“I was just trying to hold it together for everybody,” said Storey, who remained grounded thanks to Grayson’s supportive team of providers.
“Dr. Barbour had some of the best parenting advice during our journey: Be open with Grayson during his treatment; he will pick up on what he wants to hear, process it, and come ask questions later,” Storey said.
She praised the seamless coordination between different specialists at Norton Children’s.
The multidisciplinary care team, including an oncologist, neurologist and neurosurgeon, continued to keep each other in the loop and make sure that they were making the right choices on Grayson’s behalf.
“I wouldn’t have taken my child anywhere else,” Storey said.
After chemotherapy, Grayson responded well to treatment initially, and went more than a year without seizures. But when the seizures returned, multiple medications weren’t enough to control them.
“At his worst, Grayson was experiencing around nine seizures a day,” Storey said. “He couldn’t play sports, go to school or hang out at his friends’ house anymore.”
Grayson had developed refractory epilepsy (persistent seizures despite trying at least two medications), and was referred to Marie E. Clements, M.D., pediatric epileptologist with Norton Children’s Neuroscience Institute.
At the first appointment, Dr. Clements spent more than two hours with Grayson’s family, reviewing his full history and walking through every available option.
“Patients with refractory epilepsy are complex. It’s not something that you can talk through in half an hour,” Dr. Clements said. “I really want to know a child’s full story, start to finish, and all of the details in between, to be able to make a good recommendation.”
For Storey, the initial visit built immediate trust.
“The moment I met Dr. Clements, I knew that Grayson was safe and that they would do everything in their power to get him to be normal again,” she said. “And normal is all Grayson wanted.”
However, Grayson’s case presented a particular challenge: Because of the location of his brain tumor, it could not be fully removed.
“We needed to do some testing to figure out which part of the tumor or brain tissue adjacent to the tumor was causing his seizures so we could address just that part specifically,” Dr. Clements said.
Over several months, Grayson underwent detailed brain imaging, electroencephalographic monitoring and ultimately stereo electroencephalography — a procedure where electrodes are surgically implanted in the brain to precisely locate seizure activity.
For parents of children with epilepsy, the words “brain surgery” can be scary. But Norton Children’s Neuroscience Institute offers a full spectrum of surgical options, from minimally invasive procedures to implanted devices that help regulate brain activity, with specialists experienced in even the most complex pediatric epilepsy cases.
According to Storey, understanding that expertise made Grayson’s path forward feel less frightening and more like the right next step, especially after meeting with Ian S. Mutchnick, M.D., neurosurgeon with Norton Children’s Neuroscience Institute.
“The first time I met Dr. Mutchnick, there was an ease about him that I knew that he was someone that I trusted with my child,” Storey said. “After a thorough workup, passing all the tests, different scans, brain mapping and hospital stays, if there was a will, there was a way with this kid.”
As for Grayson, he wasn’t the slightest bit nervous about having surgery.
“Grayson was like, ‘Why is this surgery not happening today or tomorrow? This is taking too long,’” Dr. Clements said. “He is an incredible advocate for himself.”
On Feb. 11, 2026, Grayson underwent a craniotomy, a procedure to remove, and later replace, a piece of the skull to access the brain . Over 13 hours, Dr. Mutchnick and the surgical team then performed a left anterior temporal lobectomy and amygdalohippocampectomy, removing the portion of the brain that was generating seizures.
Grayson has been seizure-free ever since.
“When he went from having many seizures a day to not having had any seizures since surgery, I was just over the moon,” Dr. Clements said. “He was having to live each day a little bit in fear of when the next seizure would come and interrupt him from school or sports or activities or family time. I’m so excited that he can now enjoy being a kid again.”
Free from seizures, Grayson is back to playing sports. In May, the Louisville City FC pro soccer team even signed Grayson to a one-game contract in partnership with Norton Children’s, inviting him to train with the team and recognizing him as Norton Children’s Kid Captain, an opportunity recognizing children who have demonstrated exceptional courage through serious illness.
“Through all the hard times, Grayson would always say he was born to play sports,” his parents said. “We are eternally grateful to Norton Children’s for the exceptional care, compassion, and support they have shown our family throughout this four-year journey. Because of them, Grayson truly has his life back.”
“Thank you to my doctors,” Grayson said. “I would like to thank all of you guys for helping me feel better.”
According to Dr. Clements, it’s a joy to see such an energetic and brave patient like Grayson thrive again.
“He has been through so much, more than most adults have,” she said. “I am delighted that he can spend more of his childhood doing the things he loves.”