When George Priar’s parents noticed their 2-year-old son staring blankly during a summer barbecue, they never imagined the life-changing journey that lay ahead. What began as a silent and puzzling seizure soon led to a rare diagnosis and a newfound appreciation for life’s fragile moments.
Larissa and her husband, Alex, acted quickly that July afternoon, calling 911 when they realized something serious was wrong with George. Paramedics rushed him to Owensboro Health Regional Hospital, where doctors confirmed he was having silent seizures. Once stabilized, George was flown to Norton Children’s Hospital in Louisville for further care.
“We were terrified,” Larissa said. “Seeing your baby look so helpless is devastating. We trusted the team at Norton Children’s to do everything they could to make him comfortable. George had been hospitalized a few times before, but this was something we had never experienced. This time was different. We were terrified we were going to lose our boy.”
At Norton Children’s, the Priar family endured a grueling series of tests over several days. As the negative results piled up, their anxiety grew.
“It wasn’t what we wanted to hear because it meant something bigger was going on,” Larissa said. “George was in the Pediatric Intensive Care Unit before being moved to the neuro wing once he stabilized. The days were filled with teams of doctors coming in and out at all times trying to find answers.”
Finally, an MRI provided the answer: George had periventricular nodular heterotopia (PVNH), a rare brain malformation in which nerve cells fail to migrate properly during brain development. PVNH can lead to seizures, developmental delays, and other challenges. Its exact prevalence is unknown, and it is incurable.
“We were shocked,” Larissa recalled. “You never want to hear something is wrong with your child, but when the neurologist walked in with his team and pulled up the MRI, I knew something was wrong. The doctor spent a long time explaining it and answering all our questions.”
Larissa said the staff at Norton Children’s not only provided expert care but also comforted the family during one of the most trying times of their lives.
“Norton’s staff took amazing care of George and us,” she said. “They got us everything that we could need and made it as easy as possible on us. They were there to pray with us when we had no idea what was going on. They would bring George any toy or snack possible to help him feel at home once he got a little better.”
George is now on anti-seizure medication and attends speech therapy, where he is making significant progress.
“He is beginning to say a few small phrases,” Larissa said. “He looks like a normal little boy from the outside. He loves to run around and play trucks.”
For the Priars, life has changed dramatically since the diagnosis.
“Going about our everyday lives is hard,” Larissa said. “We can’t let our guard down. We always have to be ready, keep his rescue medicine with us, and make sure a hospital is always close by just in case.”
Despite the challenges, the family is optimistic. George’s care team remains in close contact, helping them manage his condition and monitor his development. His speech therapist, whom Larissa describes as “amazing,” has been instrumental in helping George reach new milestones.
As George continues to thrive, the Priars hope their story inspires other families facing similar diagnoses.
“Lean on your people and trust your doctors,” Larissa advised. “We are in constant communication with our team of doctors to ensure George is always healthy and safe. Ask questions, use the resources, and develop a relationship with your team.”
For now, George is enjoying the simple joys of childhood, and his family is cherishing every moment.
“We’ve learned to take it one day at a time,” Larissa said. “He’s a happy little boy, and we couldn’t be more grateful.”
