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.'"​

• Transcript

  Treatment gives us hope and our faith gives us hope. Without our faith yeah, I don't know where we would be. His first seizure was September 16th and was at daycare. Then two and a half weeks later, Terry was walking with him to the mailbox, and he had another seizure.

  Patients with this disorder will have seizures. They will have, you know developmental delays, some of them unfortunately lose developmental milestones, speech problems and eventually as they get older, they lose their ability to communicate and ambulate.

  You know it took us five years to have him. He's our little miracle and to hear that news, it was difficult but um we just know that God has a better plan.

  It pretty much puts back the enzyme or the protein that Oliver is missing directly into the brain.

  Within a week we had his surgery and his first treatment and then every two weeks we had to go to Denver.

  We wanted to bring that treatment here so they could still work, they could still you know let him go to daycare, school.

  I was just kind of blown away because I was, I mean we know how expensive it is, we know how much the training, how much involved it was and for them it wasn't even a question. It was just how fast can we get it.

  When they told us that it's like a four hour, four to five hour infusion that he has to sit there with you know an IV into his port, I'm like I don't know how he's gonna do it, but it's almost as if he knows he understands and often times, afterwards he goes "doctors fix me today?" We're like yeah buddy.

  He did literally hop into his room to get his treatment. He was literally skipping and hopping into it, that's how much he loves Boys Town. Just knowing how much they want to make sure that he feels comfortable there, that in itself is a huge answered prayer.

  He 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. There's one day we're out in the backyard and I threw him the baseball and he hit it and he just bolted and just started running as fast as he could, and I could see that you know all right this treatment's working and it was almost as though, um God was telling me don't give up on this kid.

  Oliver sees joy and Oliver reminds us to live joyfully. How blessed we are how every single person throughout this journey, how much they've cared about Oliver is just, it's just crazy. God doesn't give us the future. God doesn't give us the past. He gives us where we are right now and we're just, we're just so, so thankful for Boys Town.