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Wednesday, Sep. 05, 2012

Walk aims for help, education on meningitis

Special to The Olathe News

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She thought she had the flu. The symptoms were the same: fever, headache, nausea and vomiting, but 24 hours later she would be in the hospital. Doctors would tell her husband they didn’t know if she would make it.

“I didn’t know I was in danger,” said Maggi Pivovar, 42, of Prairie Village. She didn’t know then — back in 2007 — that she had meningococcal meningitis. In fact there’s a lot of things the Prairie Village woman knows now that she wishes she’d known then, so she’s working to spread her hard-won knowledge through a walk next weekend and other efforts.

Because of the disease, the membranes over her brain and spinal cord were infected and swelling. She went in to sepsis. Doctors put her into a three-week coma. Her legs developed gangrene and needed to be amputated.

It would be three years before Pivovar really started to feel like herself again.

Now that she does, she speaks locally and nationally about the disease and her experience with it, through the Mid-America Vaccination Coalition.

“If I had known about the vaccine, I probably wouldn’t have gotten sick,” she said.

Besides education, Pivovar wants to help people on the other side — people like her, who have already been sick.

When the mother of four boys lost her legs in 2007, her insurance only covered part of the cost for her prosthetic legs, leaving Pivovar and her husband with a hefty bill. To help out, a few friends put together a fundraising walk at Loose Park. Last year, Pivovar brought the walk back, this time as an official non-profit organization to help others.

On Sept. 8, the second official Maggi’s Walk will be in Franklin Park at Somerset Drive and Roe Avenue in Prairie Village. Participants have two options: a one mile entirely within the park and a 5K, which will go through the park and some surrounding neighborhoods. Runners are welcome.

Online registration is $22; registration at the race is $25. For more information about the run, visit sportkc.org/maggiswalk2012. Organizers are still looking for participants, corporate sponsors and donors.

Last year, about 250 showed up and they’re hoping for more this year. While some money from the walk goes to the organization Meningitis Angels, Pivovar also hopes to find survivors to help.

“We want to know about meningitis cases that happened in Kansas City,” Pivovar said. “Even ones that happened years ago. They’re not in the paper. We don’t know who they are.”

One recipient of last year’s funds is 4-year-old Nathan Zeller, who lives in Paola, Kan., with his parents, Carolyn and Craig, and two siblings.

Nathan contracted a form of bacterial meningitis when he was about 4 months old. That was the last time his mother, Carolyn, saw him cry. The complications from the disease left him with extensive brain damage. He has a feeding tube and likely will use a wheelchair indefinitely. But his mother says he’s come a long way from having no brain response to sight or sound.

“On paper he looks really bad,” she said. “But when you meet him, he’s just a happy little guy.”

On Aug. 13, after learning about the Zellers, Pivovar surprised Carolyn Zeller at her work. With financial help from the organization, the family was able to pay for a mobility unit called Kid Walk.

Zeller called Pivovar a local pioneer for boosting awareness of the disease.

“So many people...they’ve heard of it but they don’t know really what it is or they don’t know much,” Zeller said. “I still have a lot to learn.”

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