If Marijka Michmershuizen has trouble doing something, she’ll almost always find a way.
The 11-year-old wanted to put her bike helmet on by herself, so Leisa Michmershuizen, Marijka’s mother, told the occupational therapist and said they’d work on it when she has her appointments twice a month. But before they went, Marijka had already figured it out.
“She can easily figure out a way even if it’s not the way we might do it,” Michmershuizen said.
Marijka’s favorite subject in school is reading, her favorite color is purple, and her favorite movie is Frozen. She enjoys playing with her Barbie dolls and using her imagination with her three little sisters.
She’s also dealt with more in 11 years than most adults will ever have to endure.
Marijka is this week’s away Kid Captain as the Iowa Hawkeyes take on Maryland this weekend.
The Kid Captain program highlights the stories of pediatric patients at the Children’s Hospital while introducing them on the field during home football games, along with inviting them to Kids Day at Kinnick Stadium in August for a behind-the-scenes tour.
Early in her life, she would get sick just as any other child her age, with the exception being she would get sick far worse.
It wasn’t until 2007, when Marijka was 4 years old, that things took a turn. She was sick and eventually hospitalized in Pella and was kept there until doctors thought she was doing better. She was later diagnosed with fungal meningitis after being sent to a hospital in Des Moines, where she had several seizures and four strokes.
“The biggest thing was for about three years, it was just a lot of questions and trying to find answers; we felt like, ‘No, this is not normal,’ ” Michmershuizen said. “It was kind of always feeling like there were different pieces that didn’t make sense, and if you could put together a puzzle, then you’d know.”
Tests remained inconclusive until she was sent to Iowa City, where she was encouraged to see the state’s only pediatric infectious disease specialists.
Marijka’s mother kept a large three-ring binder with all of her medical records that she collected. Christine Ziebold — her doctor at the time — and Michmershuizen paged through each record until a few hours later they found something.
“The two of them starting paging through it, and in a matter of a few hours literally this doctor had a pretty strong idea of what Marijka’s diagnosis was,” said Joe Michmershuizen, Marijka’s father.
Marijka was diagnosed with Job’s syndrome, an extremely rare immune disorder that causes skin rashes, respiratory infections, weak bones, and retention of baby teeth.
“She felt like the answer was sort of right there staring everyone in the face, but no one had looked at her complete health picture before,” Joe Michmershuizen said, referring to the doctor’s efforts to diagnose his daughter.
Marijka spent some time at the Children’s Hospital following her diagnosis before she was able to go home. Now, she takes daily medication and undergoes physical and occupational therapy.
Because of the rareness of Job syndrome, Marijka participates in a study through the National Institutes of Health to help researchers further understand her disorder.
“When we go out there, we bring all of our medical records since the previous visit for them because that can be used for data, but then we’re here, and our doctors have questions they often call them out there and see what they’ve seen elsewhere.”
The Michmershuizen family is familiar with Maryland — the NIH is located in Bethesda.
“When she found out that was her game, she was pretty excited,” Leisa Michmershuizen said.
The family won’t be able to watch the game but will listen to it on the radio on the way to celebrate their grandmother’s 100th birthday.