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Lexi Dietz, 8, of Milan has limited use of her hands and arms because of a rare neuro-musculoskeletal condition at birth, so she has learned to draw pictures with her toes instead. Tribune photo by Anne Polta

Disability doesn't faze Milan, Minn., girl, the face of Gillette Children's Hospital 'Cure Pity' campaign

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Lexi Dietz can do most things. The 8-year-old from Milan likes to draw. She likes to read. She plays the piano and says her favorite subject is math. And she has lots of friends. "I like everybody I meet," she says. Although her life has more challenges than most children her age, Lexi is never daunted, says her mother, Jamie Brouwer.

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"She's very much like everybody else," Brouwer said. "She likes to do the same things the other kids like to do."

Lexi was born with arthrogryposis, a neuro-musculoskeletal condition involving constriction of the joints in the body, muscular weakness and limited mobility. The condition is rare, occurring in about one of every 3,000 live births in the United States.

Even learning how to walk was difficult for Lexi, and her hands and arms will likely never be fully functional, her mother said.

But with physical therapy and a determined spirit, Lexi has come incredibly far, she said. "Now she can move and talk and do all kinds of stuff -- things that nobody ever thought will be possible."

It's this story that has made Lexi one of the faces of the Cure Pity campaign, an initiative launched this year by Gillette Children's Hospital of Minneapolis to educate the public about children with disabilities and complex medical needs.

Gillette, one of the longest established children's hospitals in the U.S., works with these children every day, said Patty Dunn, public relations manager.

Spreading the message about their many abilities is something Gillette sees as its responsibility in creating a better environment for children who have disabilities, Dunn said. "These children certainly don't want or need pity. Many of our patients accomplish great things every day... They just want to lead the normal lives that they are leading."

Thousands of television viewers were introduced to Lexi and the Cure Pity campaign in an ad that ran on KARE-11 during the 2012 Summer Olympics, reaching an estimated 1.7 million households in the Upper Midwest. A website, www.curepity.org, was launched earlier this year, followed by radio spots. The TV ad will continue to air this fall.

The campaign doesn't stop here, however. Gillette also is asking the public to sign the Cure Pity pledge, committing people to focusing on the capabilities rather than the disabilities of these children. The pledge has more than 1,500 signatures so far.

The word "pity" may be strong but it's meant to resonate, Dunn said. "We're hitting it head on. This is the first year of a strong call-to-action campaign. We're asking people to get involved."

Gillette wants to turn it into a national campaign, she said. "That would be our hope, that we make a strong and major difference in how the world views children with disabilities."

Lexi has been a Gillette patient most of her life, so when Gillette contacted her family about featuring her in the campaign, the immediate response was yes. "They've been so good," Brouwer said.

"It's important for people to know that just because someone's handicapped doesn't mean they aren't people," she said. "She doesn't see herself as a victim of anything. I don't think anyone who knows her sees her as one either."

The family's home on the west edge of Milan, which is shared with brothers Gaven, 12, and Elliot, 1, and an assortment of pets, has a ramp, an accessible bathtub, and the books and crayons Lexi loves. Because she can't use her arms, she has learned to draw with her feet, grasping a colored marker between her toes. She turns the pages of a book one at a time with her toes.

Slowly she's learning to navigate a staircase, "which is quite a challenge," her mother said.

Janelle Baldwin, Lexi's personal care assistant, said Lexi is cheerful and "up for anything."

"I'm just so lucky to be able to work with her because she's so much fun," said Baldwin, a student in the nursing program at North Dakota State University.

This is the second summer she has worked as Lexi's personal care assistant. "It's a good learning experience," she said.

An important part of the Cure Pity campaign is focusing on how similar children with disabilities are to their peers, Dunn said. Lexi is "special in a lot of ways but she's ordinary in a lot of ways," she said. "To her, that's how she lives. It's nothing extraordinary. She just adjusted."

Said Brouwer: "Everybody says she's so amazing. To us it's just every day. She can't use her arms but she has a huge personality. Everybody loves her. You can't not love her. She makes new friends all the time."

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Anne Polta

Anne Polta covers health care, business/economic development and general assignment. Her HealthBeat blog can be found at http://healthbeat.areavoices.com. Follow her on Twitter at @AnnePolta.

(320) 235-1150
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