By: Brook D. Curtiss - Publisher
By noon on Saturday, July 22, nearly all the racers had crossed the finish line in downtown Crofton for the 2026 Dam Race.
Times were kept, champions were crowned, medals and plaques were distributed, and a good time was had by “most” even after all the hills, and sweating, and heat, and stress and struggle.
But just before the main festivities kicked off at the end of the finish line for the more than 350 registered competitors, around 11 a.m., one competitor crossed the finish line without a lot of visible sweat, with more than a little help and support from his friends and family, and with one of the best efforts that the Dam Race might ever see – hopefully, at least, until next year.
Racing with his parents, friends and family by his side and cheering him on – Oliver Thoene, 8-year-old son of Terry and Stacy – crossed the finish line with his mom and dad supporting either side of him, because not long ago, his brain simply forgot how to let him run, kayak or bike, or even walk.
Notable racers cross the finish line at the Dam Race every year – furthest traveled, fastest time, most improved and repeat competitors – but for Thoene and his parents, they’re racing to see the most of God’s beautiful works before their son’s terminal diagnosis out-paces him.
Oliver Thoene was born on June 6, 2018, and for the first three years of his life, he was already considered a star athlete. His dad, Terry, recalls that he could “run like the wind at two” – “hit a baseball thrown to him before his third birthday” – but in a revelation that stunned them all - before his fourth birthday, he had been diagnosed with CLN2 Batten Disease, an almost assuredly terminal disease.
Batten Disease, according to Thoene’s dad, affects the enzymes that help remove waste from the brain. Without those enzymes, the waste that is supposed to be broken down doesn’t get removed, and eventually the brain essentially “clogs” and then even simple tasks that most of us take for granted begin to shut down.
The Thoenes first noticed their amazingly athletic little boy start to stumble and have seizures that seemed a bit out of the blue. Doctors originally diagnosed epilepsy at Boys Town, and following the recommendation of their physicians, the Thoenes did a genetic test to see if it could be something else, and it was.
Terry got the call on November 22, 2021, and when he tried to call his wife, Stacy, to hear the result, the words just wouldn’t come out.
For a typical midwestern, Catholic family, one might assume that they’d start to question God’s purpose for “doing this to them” especially after the blessing it was they had Ollie in the first place.
The Thoene’s had struggled to start their family after being married in Hartington in 2012. Terry is originally from Bow Valley, and his wife, Stacy is originally from Hartington. “After a few years, we thought we’d better have kids if we wanted them,” said Terry, “and we always said we wanted to have as many as God would give us.”
Well, it turned out, after years of trying multiple avenues, God did, rather miraculously, bless them with a little boy that might not live until he’s 10 – and they’ve never doubted or looked back.
“We stuck to our faith,” said Terry, “God didn’t do this, I’m not mad at God. I’m mad at sin.”
Thoene said their family has been so blessed by God with the time they’ve been given and how it’s made them all appreciate how beautiful the world is that they can’t wait to experience the adventure of however long of life they have together with each other.
When the family went to their church in Lincoln, or even in Ponca for a baptism – they began to notice that God has been putting people in their lives and enriching their testimony “over and over and over again.”
“We were embraced by our church family in Lincoln, our neighbors in Eagle, and even by our extended family 150 miles away in the Hartington area,” said Thoene.
“We have a saying – ‘when people care, that gives us hope’” said Thoene, and that care came in droves from many different sources and blessings.
He said that while first learning about Batten Disease, they came across the “BDSRA Foundation” (Batten Disease Support, Research and Advocacy Foundation) – and noticed that June 9 had been dedicated as a day of awareness for the disease.
So they agreed to attempt a 5k run to help support the foundation.
“When we were in treatments trying to have a child, my wife wanted me to run a half-marathon,” said Terry. “I told her I would if she’d go turkey hunting with me.”
Because of what Terry says may have been a poor choice of outfit for hunting, they didn’t see a thing that trip, but he held up his end of the bargain, and ran the half marathon – and now has seen that experience as one of God’s gifts for him.
“Running helped my life – it helped my prayer life, it kept me fit” said Thoene – and through more experiences, running just became part of how the family adapted to be together through this struggle. “She never went hunting again, and I ran 7 more half marathons,” Thoene said with a laugh.
“In the Batten world – everyone faces the reality that the parents are going to outlive the kids, and you figure out how to adapt and get through that,” said Thoene. “We have our community in Lincoln, at Eagle where our home is, and three hours away where we grew up.”
“Racing” is good medicine
The first time Terry, Stacy and Ollie ran, it was just the three of them.
As word spread around their neighborhood then it was 15-20, and the next year, 125 – and now as they crossed the finish line at this year’s Dam Race there were more than 200 on their feet cheering and celebrating with their family.
Terry said that they’ve met with senators, governors and congressmen that have all wanted to help – they’ve partnered with medical researchers that are trying to find ways to combat Batten Disease, and “we’ve also met people like Heidi and Johnnie and everyone else at the Dam Race that just wanted to do anything they could to help.”
“We’ve met so many people that didn’t have to help us – not one person had to do what they’re doing to help – but they wanted to make the world better,” said Thoene. “It is really, really hard to get through this, but we’re seeing the world in a more beautiful way than we ever have before.”
And the best part is – through it all – Ollie is still Ollie.
From their website: “Oliver is still a funny, joyful little boy who teaches everyone he meets about the true meaning of bravery, perseverance, helping others, and loving Jesus Christ. This, we believe, is Ollie’s Purpose.”
At this year’s Dam Race – Ollie rode with his dad in a Kayak, alongside Terry’s brother, Jimmy. His mom pushed him in a wheeled cart during the 5k portion, and the three of them (along with others) traveled together on bikes the 13 miles back to Crofton’s Main Street and that finish line.
But unlike most racers that push harder right at the last distance – the Thoene’s all stopped together, dismounted their bikes, and together, they walked through that finish line as a family to the cheers and accolades of hundreds of instant supporters.
“This isn’t what we wanted to have happen,” said Terry, “but “hope” to us now is whatever happens… that God will have good things happen from it.”
The BDSRA is a big part of that journey as well. “It’s been beautiful to meet all these other Batten families – it takes away a lot of the feeling sorry for yourself as you get to know these families and see the ones that try to find beauty through it all – a lot of the despair goes away.”
“Once you see someone smiling that is going through the same thing – the darkness kind of goes away – everything gets lit up to see all the joy that’s out in the world,” said Thoene.
The Post-Race Interview
Terry said that they’re continuing to race – mainly now through their support group named “Ollie’s Purpose” and the BDSRA.
They’ve helped to raise funds for the foundation to continue its research to combatting the disease to help current and future generations of children – 1 in 100,000 are diagnosed with a stage of Batten Disease – and there have been some great breakthroughs already.
Thoene said that a company they’d been working with had developed a synthetic enzyme that, when injected every few weeks, can stave off the major negative effects of Batten relatively well.
It’s not a cure, but it slows down the progression said Thoene, “it gives us more time.”
And they intend to use that time racing and experiencing God’s plan for their lives as long as they’re able. “All the good we’ve been able to do since this journey started – it’s made me a better dad – God and the Holy Spirit and Ollie have corrected me on how to be a good dad.”
Thoene quoted nearly from memory a Bible passage in Mark 9 – where a desperate father clings Jesus in the prayer that He save his son, who is afflicted with convulsions and seizures. The Bible tells that Christ counseled “Everything is possible for one who believes. Immediately the boy’s father exclaimed ‘I do believe, help me overcome my unbelief.’”
The impure spirit was cast out of the boy by Christ, and he was healed. In the following passage, it is said that the disciples asked Christ why they couldn’t do the same and he replied “This kind can come out only by prayer.”
The 5Ks and the running aren’t just for keeping physically fit, but you can bet every step taken, every wheel turned and every paddle drawn – the Thoene’s – and all their supporters, are praying that God’s will be done in the life of their 8 year old, happy, laughing, 5K-running little blessing of a son.
Ollie is currently taking eye treatments for his vision, and the family is currently working hard to help him “unforget” how to walk.
And they’re hoping and praying – he’ll be able to attend the 2027 Dam Race.