CMN Hero: Altoona toddler battles rare disease - WQOW TV: Eau Claire, WI NEWS18 News, Weather, and Sports

Children's Miracle Network Hero: Altoona toddler battles rare disease

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Altoona, Wis. (WQOW) - Since 1983, the Children's Miracle Network has raised nearly five billion dollars to help children and their families. One area family is calling CMN a life-saver after helping their little girl. Her name is Caitlyn Gruenwald and she's from Altoona. Her positive attitude is the reason she is the latest Children's Miracle Network hero.

Four-year-old Caitlyn Gruenwald is much like many kids her age.

"She's very bright, so smart. She has the cutest laugh. She loves animals, so she loves to go to the zoo," Sondra Gruenwald, Caitlyn's mother says.

"I like to sing and dance. I like to play puzzles. Those are my favorite, favorites," Caitlyn says.

But, Caitlyn's life has been anything but ordinary. 

"Caitlyn was born with CLOVES," Gruenwald says.

CLOVES is an extremely rare overgrowth disorder that cause malformations throughout the body. For Caitlyn, it starts in her left leg and wraps around her body, ending at the right side of her chest. 

"She's four years old and she's in a size seven shirt. She cannot wear jeans," Gruenwald says.

The disease, which affects only 100 people worldwide, started before Caitlyn was even born.

"Caitlyn was born three weeks earlier and they had to break her right arm to get her out.  We made our first trip to Milwaukee after that we did our first MRI. At two months old she had her first surgery. At three months old we were flighted back down to Milwaukee in a jet. With CLOVES, you have an increased risk of infection. She had E-Coli, became septic and went into septic shock. She almost died," Gruenwald says.

Even with all its downs, there are still some high points, like her latest surgery. 

"When he brought her out, she had a real knee. She'd never had a real knee before. She had a real thigh. A kid should have a real kid thigh.  I was just too excited, I was so excited. And that's what her leg looks like now. It was so amazing," Gruenwald says.

Caitlyn and her family know they can handle whatever obstacles may come.

"It's something that she will have to deal with for the rest of her life. She will have many, many more surgeries. She will have many more hospital stays and I have no doubt we'll have to deal with more infections. It's just the reality of what she has. She's always smiling and laughing and ready to play and run around. She never feels sorry for herself," Gruenwald says.

Today, Caitlyn is on her second round of oral chemotherapy, which has helped stop her abnormal growths in the past. But through it all, Caitlyn's family says they couldn't have done it without the Children's Miracle Network. Besides meal vouchers and discounted hotel stays, CMN has provided Caitlyn with special shoes to help her walk and a customized chair to accommodate her full-body cast.

As for the future, doctors predict Caitlyn will have extreme arthritis in her hip. She will also need an entire hip replacement, maybe as early as in her twenty's. To keep up with Caitlyn's journey, her mom has kept a blog of her life. If you'd like to read more about Caitlyn, visit her Children's Miracle Network Hero page.

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Altoona (WQOW) - After being born with an extremely rare disease, an Altoona four-year-old has faced some major hurdles. Through it all, Caitlyn Gruenwald has managed to keep smiling. Watch News 18 tonight to meet Caitlyn and hear the rest of her incredible story. 

WEB PREVIEW: Click on the video above to hear Caitlyn's mom talk about her strong little girl and her most recent surgery.

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