When Luke Johnston was born with genetic markers, doctors had to run a series of tests After the results came back, Amy and Joey Johnston discovered that their newborn son was diagnosed with Saethre-Chotzen syndrome, a rare genetic disorder that results in fused bones throughout the body.
According to University of Iowa Healthcare, Luke underwent tethered spinal surgery and webbed finger repair at the family’s local hospital near Peoria, Illinois.
Luke was at high risk for paralysis due to his C1 vertebra being fused to his skull. This led to another diagnosis for Luke, called Atlanto-occipital assimilation (AOA). The condition causes portions of his spine to be pushed into where his brain stem and spinal cord meet.
The University of Iowa Stead Family Children’s Hospital is one of the few places in the country that performs the necessary surgery for Luke. With the Johnston family living three hours away and having two other children, the trips to Iowa City were tough on them.
“We were in Iowa for about 10 days, and then after that, he was in a full upper body brace for six months,” Amy said. “[Luke had] a lot of restrictions still, like no PE, no recess, no sports, no roller coasters, no trampolines or bouncy houses. So it kind of put a hold on everything for our family for about a year.”
On Oct. 31, 2024, Luke received his cervical spinal fusion surgery at the Stead Family Children’s Hospital. The procedure lasted 13 hours, and the UI medical staff made sure Luke felt special, since he was missing Halloween for the surgery.
According to Amy, the staff dressed up in Halloween costumes to give Luke the feeling that he wasn’t missing out.
After the surgery, Amy and Joey didn’t see their son smile once for an entire week. That changed when Luke was introduced to one of the UI hospital’s facility dogs, Corrin.
“Luke especially fell in love with the facility dog, Corrin,” Amy said. “That has helped a lot too. Corrinn has gotten him out of bed to do OT and PT, and made it a lot more enjoyable.”
Whenever the family returns to Iowa City for an appointment, Corrin provides Luke with something to look forward to and makes the check-ups less scary for the eight-year-old.
Amy and Joey are very honored to see Luke selected as a Kid Captain, and Luke looks forward to being on the other side of the wave after the first quarter of Iowa’s game against Minnesota on Saturday.
“I feel happy, I feel special, and I’m happy I get to wave at the kids at the hospital,” Luke said.
Amy also said she and her family are grateful for the support the UI hospital staff and doctors have shown during Luke’s time in Iowa City.
“We have loved our experience in Iowa,” Amy said. “We feel like they [the staff] really take their time to get to know us, and our thoughts, our questions, and our opinions on stuff. We also really love how they work together as a team. It seems like all the major doctors know each other and they communicate and work together.”
Luke has many favorites, including four school subjects. He enjoys art, Spanish, math, and speech. His favorite colors are blue and orange.
The Johnstons hope their story can inspire other families in the children’s hospital who are going through similar battles, and Amy hopes this can be the message for everyone who hears Luke’s story:
“There’s a lot of people going through medical challenges, and you just don’t realize it at the time when you’re in the thick of it, and you just need to take it day by day, sometimes moment by moment, and try not to let it overwhelm you.”