Last modified: Monday, November 9, 2009
Dance, Dance, Dance
Student-run Dance Marathon changes lives, raises millions for Riley Hospital
Originally printed in Indiana Alumni Magazine, September/October 2009
By Amy Frye
Note: The annual IU Dance Marathon fundraising event for 2009 will be held Nov. 13-15.
When Riley Lesh was born, she weighed a pound and a half. A micro preemie, born at just 25 weeks, Riley spent the first 90 days of her life, from March 2 to May 31, 2002, in the Neonatal Intensive Care Unit of Riley Hospital for Children. Her mother, Julie Grindstaff Lesh, '95, handed the fate of her first baby's life to doctors and nurses at Riley Hospital. Today, at 7 years old, Riley has an explosive energy and an irresistible laugh, "shadowing" her mother on every word she says. "I'm a goober," Julie says with a laugh. "I'm a goober," Riley echoes with a contagious giggle.
Success stories like Riley's are possible, in part, because of financial support from IU students. The Indiana University Dance Marathon has raised more than $7 million for Riley Hospital, which is part of the Clarian health network. Whether it is waiting outside for a donation or dancing in the marathon, for an entire weekend without sleep, the students' dedication never dwindles. The effect on lives is evident in both patients and Dance Marathon participants.
"I told my friends who don't have Riley kids that I wish that they could experience something like Dance Marathon," Lesh says. "They treat these kids like they are the most special people in the world, like they are superheroes. And as a parent, it helps in the healing process."
Riley's speedy recovery, thanks to the doctors and nurses at Riley Children's Hospital, seems to live on in her energy.
"One time, when my mom was talking, I did a cartwheel behind her, and they laughed," Riley remembers. "They went hahaha and wooooo!"
She bounces around the room, Disney stickers in hand, laughing and asking when she will get to answer a question. At one point, she falls into the trash can, laughing so hard she can barely pull herself out.
"It's hard to explain when you have had a child, like Riley, who you don't know if she is going to make it, and for her to have a thousand people cheering and screaming her name when she goes up on stage, and laughing and supporting her and the hospital where she was, it's a feeling you can't even explain," Lesh says. Lesh and her daughter have attended four Dance Marathons at IU and more than 60 dance marathons at other universities and high schools.
Beginning at 8 p.m. on the Friday of the event, the Ora L. Wildermuth Intramural Center at IU Bloomington becomes a playground for "Riley kids" and IU students alike. Motivating songs, such as Queen's "We are the Champions," play, and when a song plays, it is time to hear a Riley family share a story. The red carpet rolls out where students stand opposite each other, putting their hands together to create a canopy through which the families run to the stage.
"It is incredibly emotional when you're standing there," Lesh explains. "All of these people are screaming, and you're getting ready to run though."
Colorful banners painted with the Riley Children's Hospital logo -- two smiling children in a red wagon -- hang from the sides of the Wildermuth gym. When it comes time, after two long days of dancing, to announce the total amount raised, everyone comes together for an emotional end. On stage, students hold posters with digits indicating the total sum. In 2008, the crowd, dotted with the tie-dyed T-shirts of hundreds of tired students, applauded the highest amount the IU Dance Marathon had raised in its 18-year existence: $1,376,550.23.
The 'Invisible Education'
The IU Dance Marathon is not only a cause for Riley Children's Hospital, but it is also an "invisible education," says its creator, Jill Stuart Waibel, BS'92. In 1990, as an IU sophomore, Waibel started the Dance Marathon in memory of her friend, Ryan White, a crusader for the cure of AIDS and a patient at Riley. Waibel says the marathon helps students give back to their world, encouraging them to be a part of something bigger than themselves.
"It's a multimillion-dollar deal," Waibel says. "These students are raising more than most companies."
While the Dance Marathon raises more than many corporations, it takes an army to plan, including student leaders, presidents of the fraternities and sororities, the IU Foundation, the IU Panhellenic Association, student organizations, and, of course, the students themselves.
"I dedicated almost all of my time to this cause, and I do it because I love it," says Casey Crouse, IU junior and 2009 president of the IU Dance Marathon Executive Council. "I do it because I've learned through Dance Marathon that there is no greater opportunity to give to those who can't necessarily give back to you."
Waibel emphasizes that the skills she accumulated from planning and participating in the Dance Marathon proved invaluable throughout her career. Crouse says he has learned, among other lessons, how to motivate people.
"When I'm done with my college experience, I'll definitely be able to look back on it and say I got a great education," Crouse says. "I spent most of my time devoted to helping others, and I'm proud to say that I spent my college doing that."
It's taken "a village and every person along the way," Waibel says, to keep the Dance Marathon alive and growing, but the event has fostered relationships that have grown into family. Waibel, who met her husband, Andrew Waibel, BA'93, through Dance Marathon, plans to attend the 2009 event on Nov. 13, and she plans to bring her own children.
IU Dance Marathon is the largest student-run organization on campus. Many other schools have implemented their own similar events. Six colleges and universities and eight high schools have their own dance marathons benefiting Riley Hospital. For every university and high-school dance marathon, the humble motto "For the Kids" motivates these students, kids themselves, to dance.
A 'Riley Kid'
Ryan White's story as a "Riley Kid" is well documented. A hemophiliac, White contracted AIDS through a blood transfusion when he was 13 years old. In the 1980s, AIDS was a new disease that few understood. In 1984, the superintendent of the Kokomo, Ind., school district banned White from class. White spent the seventh grade taking classes over the phone as his peers sat in the classroom. White and his family took the school board to court, and White's victory opened doors for others facing barriers. He was taunted and socially ostracized. Mischief-makers vandalized his home, breaking windows and slashing the tires on the family's car.
White's successful fight to be accepted into the Kokomo school district swept the nation's headlines, nationalizing the controversy and making White the face of AIDS. Through the publicity, the issue caught the attention of musicians Michael Jackson and Elton John, to whom White grew very close.
In 1987, White and his family moved to Cicero, Ind., where he attended Hamilton Heights High School and attempted to start fresh. There, he made new friends, including senior Jill Stuart (Waibel). Their friendship blossomed. Not only did they carpool to school, but Waibel went with White to his doctor appointments at Riley. They testified in front of Congress to raise awareness about AIDS, and she watched White make a guest appearance in an episode of Sesame Street titled, "I have AIDS, a Teenager's Story."
"When I was in high school, it was Jordache jeans and Calvin Klein," Waibel says. "He taught me about what is important in life."
At a time when the average prognosis for a person with the HIV virus was six months, White lived five years longer than anyone expected. But, after five years fighting AIDS, 18-year-old Ryan White died on April 8, 1990 -- Palm Sunday.
"I have always felt very blessed that I had an opportunity to meet him," Waibel says. "He changed my life."
Throughout White's illness, his doctor was Martin B. Kleiman, Ryan White Professor of Pediatrics and former director of the Ryan White Center for Infectious Disease. White refused to see any other doctor but Kleiman. Waibel says Kleiman inspired her to pursue a career in medicine. She is now a dermatologist in West Palm Beach, Fla.
"He was a peculiar kid in a wonderful way," Kleiman says. "He had no animosity, no ego, no ulterior purpose. He just wanted to go to school, and that's all he ever wanted at the beginning of this." Still numb from Ryan's funeral, Waibel wanted to do something, anything, in memory of her courageous friend. That day, she had an idea, and Dance Marathon was born.
The 'Awful' First Dance Marathon
When Waibel thinks back to the first Dance Marathon at IU from Oct. 26 to Oct. 28, 1991, one word comes to mind: "awful." The 112 dancers were losing energy, and food had run out. People were tired. Students in charge of boosting morale brought a blow-up dragon for entertainment. One dragon, one switch, and the gym became dark. The electricity had gone out. But, they were able to survive the first Dance Marathon, raising $11,000.
The annual event has become a tradition at IU, with more than 350 students working throughout the year to raise money, connect with Riley families, and plan the marathon, which attracts another 850 dancers. Going without sleep for two days and energized with swims in the HPER pool, live music, and games, students dance in honor of Riley patients. Riley kids and their families attend the marathon to show their support and motivate the dancers.
"We are deeply grateful for the generosity, dedication, and persistence of the IU students whose yearlong efforts culminate in the annual IU Dance Marathon," says Kevin O'Keefe, president and CEO of Riley Children's Foundation. "IUDM students exemplify leadership, service, and a charitable spirit that inspires other students to respond to the needs of very sick children throughout the state who need Riley Hospital. These students are true role models to their peers and to all of us who have the good fortune to support their efforts."
The $1.4 million raised in 2008 brought the total amount of money from the Dance Marathon to $7.4 million since the event began. The money is directed to the Ryan White Infectious Disease Center, including the Ryan White professorship which Kleiman holds.
Touching Lives and Hearts
But the student-run event is about more than money. The Dance Marathon touches lives and hearts, affecting Riley patients more than medical treatment itself, says Stacie Thornburgh.
"I've been a patient since I was 24 hours old," 26-year-old Thornburgh says, adding she is stable one way and unstable in another. Medical problems with her heart, lungs, and brain force Thornburgh to make weekly trips to Riley, where she spends more time than at her house in Indianapolis.
"Riley really represents my link to life," she says. "It represents hope and a chance to be able to survive; to find another day. There are no words to actually describe what Riley represents to me because it's so many things."
At times, Thornburgh has been limited to a hospital bed as a result of spinal infections from a shunt in her body. She lays flat on her back like a "statue," without turning her head, for up to three months. If she moves, it could be fatal.
"You get a sense of how important things are to you," Thornburgh says. "You appreciate [the marathon] that much more."
Thornburgh has been to every Dance Marathon but one, which her family attended in her honor. Although Thornburgh's favorite part of the marathon is the end, when the dancers learn the amount of money raised and what they accomplished, she stresses how amazing it is to watch the dancers, see their spirit, and know they are playing a part in her survival.
"They affect us by giving us hope, courage, and a reason to fight," Thornburgh says. "When I think of times I was laying on my back and I couldn't move my head because of brain infections for months on end, at least I get to lay down. They have to stand up for 36 hours."
Her monthly visits to Riley may not be fun-filled, but Thornburgh's constant giggles and enthusiasm as she speaks about the marathon show the positive impact it has had on her.
"I wish I could tell them how much and how truly important they are to me," she says. "Can't explain it in a million years, even if you tried."
Being A 'Riley Rerun'
When Riley first opened its doors in 1924, parents would pull into the circle drive, drop their children off at the door, and drive off. In this old entrance of the hospital, there still shines a collection of stained glass windows, each colorfully illustrating a poem written by James Whitcomb Riley, for whom the hospital was named. With its rich molding, plush leather chairs, and chalky limestone walls, the foyer houses a large mahogany case holding 250,000 pledge cards that volunteers gathered throughout the state of Indiana in order to build the hospital. Now a much friendlier place, colorful tiles decorate the hallways of Riley -- each decorated with a different animal, each tile specifically chosen by a Riley child.
As a toddler, while walking through the halls of Riley, Thornburgh pointed at the ceiling and murmured her first word: "home." Her constant visits to Riley earned Thornburgh the nickname "Riley Rerun," which further explains her commitment to IUDM. Crouse says Thornburgh is his favorite motivational speaker at the marathon and his favorite Riley kid.
"It's been an important part of my life," Thornburgh says. "I want them to know the difference they make does help and does save lives. I am here, and other kids are here because of them."