Iowa City family facing uncertainties as daughter fights rare genetic disease

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CHICAGO, Illinois (KCRG) - If you ask her mom, Malee Crider-Jensen is an 11-year-old who doesn’t want to be like most other girls.

Malee Crider-Jensen with her moms at the Lurie Children's Hospital of Chicago. (Courtesy: Tiffany Crider-Jensen)

“She uses the term ‘brutiful,’” Tiffany, her mother, said. “It’s from a quote, one of her favorite quotes, saying that life is both brutal and beautiful.”

That duality of beauty and brutality is a reality the Iowa City girl knows too well. Malee was born with a rare genetic disease called Alagille Syndrome, which weakens different parts of her body.

“Malee specifically has severe liver disease, mild cardiac disease, and mild kidney disease,” Tiffany said.

After a stay in the hospital last November, Malee was put on the liver transplant waiting list.

Then earlier this year, she was back at the University of Iowa Hospitals and Clinics because of hemorrhaging before moving to the Lurie Children’s Hospital of Chicago, where she’s been since then.

"We've been in Chicago since April 11, I believe, and then we were placed as high as we could on the transplant list for a liver transplantation,” Tiffany said.

That new liver came in July, but there were major complications, and her family didn’t know how things would turn out for Malee.

“It was a very, very, very scary time,” Tiffany said. “The doctors have been fantastic, the nurses have been fantastic, and she is a very strong and determined little girl. So she fought hard, and she’s still here.”

Within the last week, Malee has been breathing on her own and was taken off some medications, and for the first time in a month, Tiffany heard the sound of her own daughter’s voice.

“That was very emotional to hear her voice again,” she said.

Through it all, Tiffany and her wife haven’t left their daughter’s side, which created a problem at Tiffany’s job as a nurse in a Cedar Rapids hospital.

Between staying with Malee and time took off because of a workplace injury a few years ago, she’s run out of medical leave and leave from FMLA, the Family and Medical Leave Act of 1993.

“We are jobless at this point,” Tiffany said, noting all her leave officially ran out Friday. “But you do what you have to do, and I need to be here with her.”

Cedar Rapids attorney Mark Zaiger, who practices labor and employment law with Shuttleworth & Ingersoll, said employers can decide whether or not to extend an employee’s leave past what’s required by FMLA.

Under federal law, most employees can take 12 weeks in a 12-month period of unpaid, job-protected leave for specific medical and family reasons. Among those reasons is to care for a spouse, child or parent with a serious health condition, such as Malee’s.

Zaiger said for some employers, possible extensions are considered on a case-by-case basis, with considerations including the necessity of having someone at work in that job, as well as the cost of continuing to pay for an employee’s benefits, among other factors.

“Is it a prudent thing to consider varying from what the law requires? And employers have different attitudes toward those kinds of issues,” Zaiger said.

In the Crider-Jensen situation, the family also still doesn’t know how much of Malee’s current hospital stay will be covered by Medicaid.

“We’re jumping through more hoops to make sure that she’s covered, and now that I’ve lost my job, we lose that secondary insurance as well,” Tiffany said.

Tiffany said she’s “cautiously optimistic” about her daughter’s health at this point. Her status can change day-to-day, and they never know which way it’ll turn.

“But she’s still here,” Tiffany said. “That’s all that matters.”

Friends of the Crider-Jensen family have also set up a GoFundMe page to help with Malee's medical expenses. Anyone interested in learning more can find the link to that page at the bottom of this story, or in a sidebar on the right-hand side.