Caitlyn Gruenwald, a four-year-old from Altoona, has struggled with CLOVES Syndrome — Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Spinal anomalies — since birth. The rare condition causes some parts of Caitlyn’s body to be enlarged.
Caitlyn is one of many children throughout western Wisconsin with terminal, life-threatening or chronic diseases. Like many other families, Caitlyn’s looks to Children’s Miracle Network to alleviate some of the financial burdens of medical costs.
Children like Caitlyn inspired two UW-Eau Claire students to step up and make a difference. Sophomores Lauren Grover and Lexie Hennen are working to bring a chapter of Children’s Miracle Network Marathon to Eau Claire.
The Dance Marathon is a nationwide fundraising offshoot of Children’s Miracle Network. However, Grover and Hennen have much bigger plans for their chapter.
“It’s cool because (the money we raise) will go straight to Gundersen Health System in La Crosse,” Grover said.
The Dance Marathon organization uses the fundraised money to give families like the Gruenwalds lodging and meal vouchers. The organization’s work also increases awareness of rare diseases.
“A lot of kids have diseases that no one really knows about, so it’s really cool because they get help and the diseases gets more public recognition,” Hennen, an elementary education major, said.
“When families do not have nearby Children’s Miracle Network Hospitals, a lot of times they can’t afford to travel all over the place,” Hennen said. “Some of (the money) may go to research, but it mostly makes the burden of having a sick child a little bit easier.”
Co presidents Hennen and Grover cannot wait to meet Gruenwald and her family, as well as other families like them while planning for UW-Eau Claire’s Dance Marathon intensifies in the fall.
Having just begun Eau Claire’s chapter, the girls’ focus has been more on building and structuring a Dance Marathon team. That is, after they finally found someone else as interested in and passionate about the cause.
“Lauren started a facebook group talking about starting one, and just seeing who would be interested,” Hennen said. “It’s a ton of work and I didn’t want to do it myself, so I contacted Lauren.”
Hennen cites a girl from the camp she works at as her main inspiration for getting involved in the cause.
“At home, I was in this other program, and we had a girl who was supposed to go to the camp I work at,” Hennen said. “But she couldn’t go because she was so sick, and I guess that’s why I became passionate about it.”
Over the past few months, Grover says the two have been focused on getting to know each other in preparation for the planning the next year brings.
“Neither dance nor marathon,” but “a celebration of life,” UW-Eau Claire’s chapter of Children’s Miracle Network Dance Marathon will be planning many other various fundraising opportunities throughout the year.
“We’re planning to do fun things, like a ‘fun run,’ and we’d even like to start up a benefit concert,” Grover said.
Together Grover and Hennen created a website, and Facebook, Twitter and Instagram accounts. Still, they struggle to attract interest.
“We have a solid 14 people,” Grover said. “They’re all really dedicated, but we’re definitely open to more.”
Though the co presidents have never participated in a dance marathon themselves, their passion for the cause has driven them to begin planning Eau Claire’s first Children’s Miracle Network event.
“I think if more people knew about it, there would be a lot more people involved,” Hennen said. “It’s a really rewarding and fun experience.”
In the future, Grover and Hennen hope their work will not only help families in need, but it will also spark a new widely known campus tradition.
“As the years go on, our goal is going to be set higher and higher at raising more money,” Grover said. “We’re hoping to get a strong team going, and get the word out so it becomes something that the campus is passionate about.”