IOWA CITY, IOWA — The sports world measures everything by numbers.
But there is no measurement for bravery, or determination, or dignity.
Luke Johnston inspires those around him, makes them better. That’s what captains do in sports, and that’s why the 8-year-old Dunlap boy has been named a captain by the University of Iowa football team.
On Saturday, when the Iowa Hawkeyes host Minnesota in a Big Ten Conference game at Kinnick Stadium, Johnston will be on hand as a guest of honor in Iowa’s Honorary Kid Captain program.
“Honestly, Luke, he lifts us up, lifts up all of us,” said Amy Johnston, his mother, and a kindergarten teacher in the Dunlap school district. “He takes everything that comes at him. So brave and so strong. He’s been so exposed to the medical field, and he’s realized every time he faces a procedure he’s going to come out OK. The rest of our family relies on him for that peace, and he puts trust in his doctors and the people around him.
“His attitude gets him through it all.”
Luke Johnston is a rarity on this earth, a one-in-50,000 birth of challenges that would break many.
“Luke has a genetic disorder,” Amy Johnston said. “It creates a domino effect triggering all the other things.”
Eight one-hundreds of 1% of the world
Luke Johnston was born with fused ribs, scoliosis, a tethered spinal cord, congenital ptosis, clubfoot and webbed fingers. He also failed his newborn hearing screening.
Blood tests revealed Luke had Saethre-Chotzen syndrome, a genetic disorder characterized by fused bones that is rare, impacting about one in 50,000 babies. He underwent tethered spinal cord surgery and webbed finger repair in Peoria before he turned 1.
“Stuff that’s not supposed to be connected is fused together,” his father, Joey Johnston, said in describing the disorder in published stories. “For Luke, that means his C1 vertebra was fused to his skull.”
His parents explained that Luke’s deafness is related to the syndrome, with the bones inside his ear fused together and not formed correctly.
Then in 2024, Luke was diagnosed with an even rarer condition, atlanto-occipital assimilation, in which portions of his spine were pushed into where his brain stem and spinal cord meet, putting him at risk of paralysis, even from a short fall.
The condition is extremely rare, with only (eight one-hundreds of one percent) of the world’s population affected.
The Johnstons — a Dunlap family — embraced these challenges.
In addition to mom, Amy, 40, and dad, Joey, 39 — both 2004 Dunlap High School grads — there is big sister Ella, 10, Luke, 8, and Cole, 4, the latter born without an esophagus but treated and doing fine now.
“Ella, she’s seen some things,” Amy Johnston said. “She is like a little mother hen, looks out for both her brothers. It can be mentally exhausting for us. Luke has 13 specialists and he has two or three doctor appointments per week, plus phone calls and scheduling. My daughter plays travel softball. Luke loves swimming and scouts. There is a lot for us to do.”
This weekend, they’ll have something to do at Kinnick Stadium.
Doing the wave
Doctors in Peoria did not believe they could do the surgery needed for atlanto-occipital assimilation. They referred the Johnstons to other hospitals in major cities around the U.S.
A chance meeting at a rest stop in Missouri delivered direction. Among the places doctors had recommended was University of Iowa Stead Family Children’s Hospital in Iowa City.
At a rest stop in Missouri, a stranger approached the family when he saw Luke in a neck brace. He told them how he’d taken his own child to the Iowa hospital for surgery.
The Johnston’s followed suit. At Stead, there was neurosurgeon Dr. Arnold Menezes, who had written articles about the syndrome. Another neurosurgeon, Dr. Brian Dlouhy, performed the 13-hour surgery on Luke Johnston, who was placed on a ventilator afterward.
Since it was at Halloween in 2024, the hospital staff dressed up in costumes for the boy. After the surgery, the facility’s dog, Corrin, visited him at his bedside and became a friend who motivated him through his recovery.
But the highlight was the Hawkeye Wave, where the crowd at an Iowa football night game put their cellphones on and waved toward Luke at the hospital, where he could see them.
“Luke just started crying,” Amy Johnston said. “It made him feel like he wasn’t alone, and all of those people were there to cheer him on.”
The captain will be ready
In August, Luke Johnston was in Kinnick Stadium for the Hawkeyes’ Kids Day event.
He was one of 12 patients from Stead chosen to participate, nominated by his doctors. He did video, had interviews with TV and print reporters, and met Iowa player Kelby Telander, a deaf linebacker who has a cochlear implant like Luke does.
“That moment was so powerful for him,” Amy Johnston said. “It was like, ‘See Luke, you can do anything you want to do.’ “
On Saturday, he’ll be attending the university president’s tailgate party. The Hawkeyes will provide a family liaison to help them navigate the day. Luke will meet Iowa head coach Kirk Ferentz in the tunnel before the game. He’ll be in the Iowa locker room with the players and participate in a pre-game ceremony.
Then after the first quarter, he will lead the crowd in a wave. He’s even selected the music for it: “Up” by Connor Price and Forrest Frank.
Children’s Hospital at OSF Peoria and Stead in Iowa City communicate often about patient Luke Johnston. He’s an ongoing work. He selected colors for his own body brace and his restrictions on movement are gradually being relaxed.
Like the lyrics the song this Kid Captain chose would suggest:
“I was down, but now I’m up …”This all God this ain’t no luck …”Moving so quick, it’s like they stuck in park …”They see the numbers, but I see the heart.”
Dave Eminian is the Journal Star sports columnist, and covers Bradley men’s basketball, the Rivermen and Chiefs. He writes the Cleve In The Eve sports column for pjstar.com. He can be reached at 686-3206 or deminian@pjstar.com. Follow him on X.com @icetimecleve.
This article originally appeared on Journal Star: ‘He lifts us up’: Dunlap boy with rare genetic disorder named Iowa football’s Kid Captain
Reporting by Dave Eminian, Peoria Journal Star / Journal Star
USA TODAY Network via Reuters Connect
