Kid Captain: Emma Miller overcomes rare skin disease


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Emma Miller’s vibrant, now-daily routine as a kindergartener is a stark contrast to what she went through just over one year ago.

For Miller, this week’s University of Iowa Children’s Hospital Kid Captain, the change in health started with a standard fever.

Last year, the now 5-year-old was discovered with Stevens Johnson Syndrome, a deadly skin disease that causes red rashes that forms into blisters before leaving a burned-skin-like appearance.

“We were giving her ibuprofen for the fever to go down, that was a Friday,” Jodi Miller, Emma’s mother, said. “But Saturday morning, there were red rashes covering her face and then went all over her back.”

The blister caused Emma to lose about 85 percent of her skin.

Before an 18-hour stint at Waterloo’s Covenant Medical Center, she was later transferred to the Pediatric Intensive Care Unit at the UI’s Children’s Hospital.

Gwen Erkonen, UI clinical assistant professor of pediatrics, said Emma was treated nearly as a burned patient through the support of antibiotics and ibufluids, and she had to be in a ventilator for days.

Andrew Miller, Emma’s father, said the treatment and services Children’s Hospital offered was a different atmosphere from the other hospitals he has gone to.

“We were involved in everything they did,” Andrew Miller said. “Each and every time they did something different, they would let us know what they’re doing. We couldn’t ask for anything better.”

Emma’s parents said in 11 days, she gradually started feeling better, with minor problems around her eyes and ears that still remain.

“When [Emma] got all better before she left the hospital, she looked perfect,” Erkonen said. “She just looked beautiful when she left; you would never know what she’s been through.”

On Saturday, when the Iowa football team faces off against Minnesota on in the TCF Bank Stadium, Emma will be there to cheer on the Hawkeyes.

Jodi Miller said that today, her daughter is a normal kindergarten girl, loving school and friends, and she is proud of Emma’s writing ability.

“She’s in school, so she’s learning how to write numbers and letters, that’s a big step for her,” she said. “And she can draw now. She learned it yesterday, and that’s a huge deal for her.”

Andrew Miller said he would not be able to ask for a better daughter and brought the importance of bringing awareness of the Stevens Johnson Syndrome.

“Not a lot of people know about [the Stevens Johnson Syndrome],” he said. “There’s not really a mandatory reporting system about it. Any awareness that can be raised through [Emma] is great.”

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