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“We were terrified of losing our son.” Owensboro family finds hope after 2-year-old’s rare diagnosis

“We were terrified of losing our son.” Owensboro family finds hope after 2-year-old’s rare diagnosis

When George Priar’s parents noticed their 2-year-old son staring during a summer barbecue, they never imagined the life-changing journey that awaited them. What began as a silent, disconcerting attack soon led to a rare diagnosis and a new appreciation for life’s fragile moments.

Larissa and her husband, Alex, acted quickly that July afternoon and called 911 when they realized something serious was wrong with George. Paramedics rushed him to Owensboro Regional Health Hospital, where doctors confirmed he was having silent seizures. Once stabilized, George was flown to Norton Children’s Hospital in Louisville for additional care.

“We were terrified,” Larissa said. “Seeing your baby so helpless is devastating. We trust that the Norton Children’s team would do everything possible to make you feel comfortable. George had been hospitalized several times before, but this was something we had never experienced. This time it was different. “We were terrified of losing our son.”

At Norton Children’s, the Priar family endured a series of grueling tests over several days. As the negative results piled up, his anxiety grew.

“It wasn’t what we wanted to hear because it meant something bigger was happening,” Larissa said. “George was in the Pediatric Intensive Care Unit before being transferred to the neurology wing once he was stabilised. The days were filled with teams of doctors coming and going 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 do not migrate properly during brain development. PVNH can cause 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 that something is wrong with your child, but when the neurologist came in with his equipment and pulled out 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 difficult times of their lives.

“The Norton staff took wonderful care of George and us,” he said. “They got us everything we could need and made it as easy as possible for us. They were there to pray with us when we had no idea what was happening. “They would bring George any toy or snack possible to help him feel at home once he got a little better.”

George is now taking anti-seizure medication and attending speech therapy, where he is making significant progress.

“He’s starting to say some little phrases,” Larissa said. “He looks like a normal kid from the outside. “He loves to run and play with trucks.”

For the Priars, life has changed dramatically since the diagnosis.

“Everyday life is difficult,” Larissa said. “We cannot let our guard down. We always have to be ready, carry their rescue medications with us and make sure there is always a hospital nearby 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, who Larissa describes as “amazing,” has been instrumental in helping George reach new milestones.

As George continues to thrive, the Priars hope his 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 resources, and develop a relationship with your team.”

For now, George is enjoying the simple joys of childhood and his family cherishes every moment.

“We’ve learned to do it day by day,” Larissa said. “He is a happy boy and we couldn’t be more grateful.”