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Pediatric Neurology - Oliver's Story

Oliver Thoene had his first seizure at daycare. Two and a half weeks later, during a walk to the mailbox with his dad, he had his second.

Oliver was referred to Boys Town Pediatric Neurologist Isabella Herman, M.D., Ph.D., who diagnosed him with epilepsy. She also ordered a genetic test, and the result was a life-changing diagnosis: Batten's disease, a neurodegenerative condition that affects only one in a million people.

“It took us five years to have him. He's our little miracle, and to hear that news…" Oliver's mom Stacy said, her voice breaking. “It was difficult, but we just know that God has a better plan."

Symptoms of Batten's disease include seizures, developmental delays, loss of developmental milestones, speech problems and an eventual loss of communication skills and motor function. At this point in time, there is no cure.

There is, however, an infusion treatment is available to slow the progression. When Oliver was first diagnosed, these infusions were only available in Denver. Wanting to provide this necessary treatment in way that was more convenient for Oliver and his family, the team at Boys Town National Research Hospital immediately contacted the Colorado team to begin treatments and collaborate to bring the medication to Omaha.

“I was just blown away," Stacy said. “We know how expensive it is, we know how much the training [took], how involved it was. And for them it wasn't even a question. It was just, 'how fast can we get it?'"

Oliver began receiving treatments in Omaha on February 14, 2022. He will need them every two weeks for the rest of his life and has shown some improvements since starting.

“He [had] started to regress with his physical therapy. When he would run, he would drag his feet, and he was losing his balance and he'd just fall over," said Terry Thoene, Oliver's dad. “There's one day were out in the backyard and I threw him the baseball, and he hit it and just bolted and just started running as fast as he could. And I could see that, you know, 'alright, this treatment's working.' It was almost as though God was telling me, 'Don't give up on this kid.'"​


Patient Story Pediatric Neurology