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If Ball State alumna Anna Muckenfuss were to personify the Ball State Dance Marathon Morale Committee, she would use her her six-year-old cousin Dean to represent the group.
“Morale is very colorful and bright and energetic and just won’t shut up — that’s the kind of committee we are, and that’s the kind of person he is,” Muckenfuss said.
While Muckenfuss graduated in the Fall of 2017, she was allowed to return and participate for this year’s Ball State Dance Marathon, BSUDM.
Muckenfuss will help lead the line dance on stage, and as she works to keep the dancers’ spirits up throughout the night, she will be thinking of Dean.
Shortly after Dean was born, he was diagnosed with cystic fibrosis, a genetic disorder that causes a build-up of mucus in the lungs, pancreas and digestive system.
“We could barely touch him the first couple years of his life,” Muckenfuss said. “We couldn’t hold him for a long time, and we felt distanced from him, which was frustrating because we were so excited to have this new baby in the family.”
Dean, who is now in first grade, has trouble digesting certain enzymes, so he has to take the enzymes before he eats. He also does daily breathing treatments with a nebulizer, and often wears a vest that shakes his chest to get the mucus loose from his lungs.
Fortunately for Dean, doctors were able to diagnosis his condition at birth and could start treatments early on, but this doesn’t happen for everyone diagnosed with cystic fibrosis. For people who were born in 1996 like Muckenfuss, it could have taken years before doctors discovered that a patient has cystic fibrosis.
“[Patients] would be 3 or 4 years old before they find out, and by that time, they would have already sustained tons of lung damage because this thick mucus scars their lungs and makes it really, really difficult to breathe,” Muckenfuss said. “Because Dean’s had this treatment since he was a baby, he’s going to live much longer than people born at the same time I was would live.”
Dean goes to Riley Hospital every few months for check-ups, but Muckenfuss said that he still gets sick because cystic fibrosis causes his immune system to be limited, making it easier for him to get sick.
“Just by looking at him, you wouldn’t know he has this genetic disease, but he does,” Muckenfuss said. “You’re reminded of that when he goes to Riley and ha[s] the port put in his chest so they can do IV medications. And that’s difficult.”
Outside of his treatments and check-ups, Dean acts like a typical first-grader. His talkative, opinionated and lively personality along with his love for being the center-of-attention reminds Muckenfuss of herself, she said.
Muckenfuss and Dean developed a special relationship when Dean’s little sister was born. She would pay extra attention to him when family was over and ended up becoming Dean’s “favorite person.” Their relationship is what lead her to involve Dean in Dance Marathon as a Riley kid.
“We wouldn’t have the Dean that we do, who’s so special and able to do things that normal kids do, if we didn’t have Riley to help him with that and make him that way,” Muckenfuss said. “He wants to run around and be with his friends, and he’s able to have sleepovers with kids his age because Riley has helped him to the point where he can act like a normal kid.”
During each meeting for the morale committee, members share a Riley story to remind themselves of why they participate in Dance Marathon.
After Muckenfuss shared her story, her Sigma Kappa sorority sister Emma Nossem, a senior vocal performance major, said she felt instantly more connected with Muckenfuss and realized the two of them share a similar motivation for being involved in Dance Marathon.
“I lost a dear friend, Colleen Lusk, on October 24, 2013 to cystic fibrosis,” Nossem said, “in addition to another one of my friends, Lauren Yates, who passed from bile duct cancer, Colleen is definitely one of the biggest reasons why I am so passionate about BSUDM, why I got involved initially and why I've worked so hard to ensure that people fighting alongside Anna and I can provide a brighter future for kids like Dean and Colleen.”
Muckenfuss said the Riley stories can be “heavy” sometimes, but she is glad to have support from friends like Nossem and Mayika James, another member of Sigma Kappa, who she feels she can be both “light-hearted with” as well as share emotional stories.
As Muckenfuss and the rest of the participants prepare for this year’s Dance Marathon on Saturday, Muckenfuss said she is looking forward to raising money for programs that help children at Riley Hospital every day. Also, it is important to her to make sure that the necessary programs are funded and available for Dean in case his condition ever worsens.
One of the programs that Dance Marathon donates to is Riley Hospital’s Palliative Care program. For families and children who have been given a terminal diagnosis, the Palliative Care program helps make the final few days, weeks or months of a child’s life as “fulfilling, happy and normal as they possibly can,” Muckenfuss said.
BSUDM also donates money to Riley Hospital’s Magic Castle Cart, which gives toys to children during their hospital stays. A $1 donation pays for one small stuffed animal giraffe, a popular item on the Magic Castle Cart, but each committee member raises $350 for the program.
Muckenfuss said her desire to be successful in her life as well as with BSUDM comes from her hope that Dean can also grow to adulthood, have a successful life and impact the lives of her children as much as he has affected her life.
“He and all the other Riley kids — they’ve showed me that life is not guaranteed, and your tomorrows aren’t necessarily going to be there,” Muckenfuss said. “Knowing that Dean may live a shorter life, and I could live a very short life too, it tells me that I need to take risks. If he can be brave and do all these hospital stays, pokes and prods by doctors, then I can do anything that I set out to do.”
Contact Nicole Thomas with comments at nrthomas3@bsu.edu.
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