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IOWA CITY, Iowa — Marijka Michmershuizen loves to swim, ride her bike, and play with her younger sisters Metje, Mariel, and Miriam. But this giggling 11-year-old has been through more than most adults.
Early in her life, Marijka had serious skin rashes and respiratory infections. She saw a number of specialists, but tests were inconclusive.
At age 4, Marijka was diagnosed with fungal meningitis. After spending a week in a Des Moines hospital, she started having seizures and strokes.
“The doctor said, `There is something that we’re not finding. We need her to go to Iowa City,'” remembers Leisa, Marijka’s mom.
Marijka was airlifted to University of Iowa Children’s Hospital, where the state’s only pediatric infectious disease specialists were waiting for her.
Leisa had compiled a thick binder of Marijka’s medical records over the years. Marijka’s UI doctor spent all night poring over the information.
“I felt like that was the first time someone really looked at the big picture and tried to put all those pieces together,” says Leisa.“Her only response was, `When someone is this close to death, you make time to figure it out.’ They saved her life as it was slipping away.”Leisa Michmershuizen
Marijka was diagnosed with Job syndrome–an extremely rare immune disorder that causes skin rashes, respiratory infections, weak bones, and retention of baby teeth, among other things.
Leisa and her husband, Joe, couldn’t believe that in a matter of hours, one doctor figured out what other physicians had missed for years.
“Her only response was, `When someone is this close to death, you make time to figure it out,'” says Leisa. “They saved her life as it was slipping away.”
Marijka spent 16 weeks at UI Children’s Hospital before she was stable enough to go home. Today, she takes daily medications, visits UI Children’s Hospital for regular clinic appointments, and undergoes physical and occupational therapy to improve the fine motor skills lost in her strokes.
Because Job syndrome is so rare, UI doctors routinely consult experts at the National Institutes of Health (NIH) regarding Marijka’s case. She now participates in an NIH study to help researchers further understand her disorder.
“I truly feel like the doctors at the UI have made a difference in our daughter’s life,” says Joe. “Going forward, they have joined forces with doctors and scientists at the National Institutes of Health, so now we have an even larger care team that focuses on our daughter and how to keep her well.”
Leisa and Joe are thankful for the Continuity of Care team, music therapists, and Child Life specialists who went above and beyond for their family. They are especially grateful for the pediatric hospitalist team, who are the family’s main contacts during Marijka’s hospital stays.
“They were advocates for us and cheerleaders for us, and that was such a blessing,” says Joe. “That’s an added program the University of Iowa has that is purely there for the benefit of the families who are patients here.”
Through it all, Marijka’s strength has inspired those around her.
“She is the kind of child that just keeps on going no matter what,” says Leisa. “She’s a very strong little girl.”
Watch Marijka ‘s video HERE.
Oct. 17, 2014