Kid Captain stays positive despite undiagnosed disorder

7-year-old Jaelyn Butikofer is the first Kid Captain of the 2017 football season and has had an undiagnosed disorder her whole life. (Contributed photo)

This year’s first Kid Captain has had an undiagnosed disorder her whole life, but 7-year-old Jaelyn Butikofer never stops smiling.

For each football game, the Kid Captain program honors a child undergoing treatment at the University of Iowa Stead Family Children’s Hospital. At Saturday’s game against Wyoming, Jaelyn will spend an hour on the sidelines with the team before the game and during the national anthem.

Jaelyn travels to Iowa City from her hometown of Manchester, Iowa, every few weeks as her doctors search for answers for her and her family.

And the regular trip is something Jaelyn looks forward to.

“She’s not scared to go to the hospital, she gets excited when she sees it when we pull up and park in the ramp,” Jaelyn’s mother, Andrea Butikofer, said. “She loves the staff and her doctors there, and granted she’s scared to get her blood drawn and have procedures, but they make it fun for her.”

Some of the symptoms of her condition include the inability to bear weight on her legs, difficulty speaking, and scoliosis.

Jaelyn was born a healthy baby, but when she was 4 months old, her parents noticed she was not eating normally and not gaining weight.

Her local doctor recommended she visit the Children’s Hospital for treatment.

“She’s had lots and lots of testing and lots of surgeries and procedures and hospitalizations,” Butikofer said. “But she’s been through a lot, and she keeps a smile on her face, and she’s strong and brave.”

She likely has one or more undiscovered disorders, which her doctor, Stuart Weinstein, an orthopedic surgeon at the Children’s Hospital, said is quite uncommon.

“Usually after enough testing, you can find what’s wrong with the child, what the fundamental problem is, but with Jaelyn, she’s been through lots of tests, but with our knowledge, no one really knows what it is,” Weinstein said.

Weinstein, who has been Jaelyn’s doctor since she was a baby, applauded her parents for being positive and hopeful despite the frustrations of not having a name for her condition.

“As parents, you want to have answers for your child’s problems, and the best in medicine doesn’t provide those answers in 2017,” he said. “When you have a child with special problems, if you don’t have a family that’s as supportive, it makes it difficult. She’s lucky to have her parents.”

Liz Faine, a Children’s Hospital nurse practitioner, has been with Jaelyn since her first surgery.

“Anytime we know she’s coming, everyone is super excited,” Faine said. “She puts a smile on all our faces. She’s so sweet and so cute, and no matter what gets thrown her way, she is so brave and always comes through everything with a smile on her face.”

This weekend will be Jaelyn’s first time at a Hawkeye football game.