MDA summer camp celebrates 60 years of awesome adventures for children with muscle disease
Ben Schussler loves to fish. So when he’s at MDA summer camp, he heads for the dock and casts his line as often as possible. “I catch two or three fish a day,” 8-year-old Ben boasts with glee in his little voice. Fishing is not a particularly unusual passion for a boy his age, although in Ben’s case, it isn’t something he thought he would — or could — ever enjoy.
|Ben Schussler enjoys his favorite MDA summer camp activity.|
Ben has Duchenne muscular dystrophy (DMD), and even at his young age, he was beginning to experience barriers and boundaries that able-bodied children don’t have to think about.
Acutely attuned to Ben’s feelings, his mom, Missy Schussler, attended community support groups led by her local MDA office and researched the MDA summer camp program. Despite initial reservations about sending her “baby” away to overnight camp for a week, she ultimately decided to let him attend — in the hopes that MDA summer camp was precisely where Ben would learn to overcome those barriers and boundaries.
After Ben’s first experience at MDA summer camp last year, Missy says her deepest hopes came true.
“MDA summer camp goes beyond an amazing range of awesome adventures,” explains Carolyn Minnerly, MDA director of summer camp and support services. “It’s also a unique week when our kids bond with others who understand what it means to live with a neuromuscular disease. For many, it’s the only time they don’t feel different or alone.”
While acknowledging the importance of celebrating our differences, Minnerly also knows how liberating it is when children learn they’re not that different after all and that they’re certainly not alone. “I once met a little girl who was sure she’d never fit in at camp because she wore leg braces, and she was convinced that the braces would make her different,” Minnerly recalls. “She finally did attend an MDA summer camp, and to this day, I carry in my heart the look on that little girl’s face when she arrived: For the first time in her life, she saw other children wearing braces. She wasn’t different! It was an amazing moment in her life.”
A world of possibilities
While MDA summer camp is truly unique, the experiences of that little girl and Ben Schussler, thankfully, are not. For 60 years, thousands of children and teens living with neuromuscular disease have attended MDA summer camp. There, each has found a safe, nurturing world created specifically for them and filled with opportunities to explore awesome adventures, new experiences, lifelong friendships and endless fun.
Since the program’s launch in 1955, MDA summer camp has expanded to include nearly 80 camps across the U.S., including Puerto Rico. And as Ben soon discovered, MDA summer camp is a place where everything is accessible and few boundaries or barriers exist. Instead, there are bridges — sometimes real, sometimes metaphorical — that lead campers to possibilities they once thought impossible because of their physical disabilities.
|From the top: Brian Spann, Dawson Thomas, Jordan Curry, and MDA summer camp nurse Kristin Moran with campers and volunteers.|
Not every MDA summer camp “possibility” involves fishing poles and zip-lines. It’s also a place where children with neuromuscular disease meet other kids who share the same needs. For 15-year-old Lexi Noland, who has Charcot-Marie-Tooth disease (CMT), attending MDA summer camp in 2014 helped her rediscover her voice. “Until camp, Lexi wanted nothing to do with her disease. It felt like she was in denial,” says her mom, Keia Noland. “After attending MDA summer camp, though, she did a 180. During that one week of camp, she was no longer ‘the physically handicapped kid’ and she realized for the first time that CMT does not define her. She came home wanting to know everything about CMT — and she wants to help others understand, too.”
To give her voice and others a platform, Lexi accepted the position of 2015 MDA Arizona State Goodwill Ambassador. Lexi makes public appearances throughout the state, representing individuals and families living with muscle disease and playing an essential role in motivating the public to support MDA’s fight against muscle disease through donations and volunteer action.
Jen Onsum, diagnosed at 18 months with spinal muscular atrophy (SMA), attended MDA summer camp for several years. That collective experience, she says, brought a realization that changed her world forever. As a youngster, she’d always assumed that role models could only be able-bodied people, but at camp she found herself surrounded by one remarkable role model after another — older girls also living with neuromuscular disease who inspired Onsum to become the accomplished 34-year-old woman she is today.
“I really looked up to those girls. They were smart, pretty, fashionable, funny, outgoing and all so comfortable being themselves,” Onsum recalls. “These girls went on dates, some got a driver’s license, and many were headed off to college and careers. With these girls as my role models, I learned it’s OK to be myself, and I could do everything anyone else does. I’m a confident and successful person today because of MDA summer camp.”
60 years of impact
Opening kids up to a world of possibilities is what has made the nationwide network of MDA summer camps unique and life-changing for 60 years, ever since the first camp debuted as an experiment in 1955 with 16 campers with neuromuscular disease.
The MDA summer camp concept was a smashing success — for campers, parents, volunteers and sponsors alike. Six decades later, MDA hosts camp sessions each year, from June through August, in which more than 3,500 youngsters, age 6 to 17 with neuromuscular diseases, experience a fun-filled week where anything is possible.
To create a safe environment, each camper is assigned a volunteer counselor who stays by the camper’s side day and night. The volunteer pushes wheelchairs, stretches muscles, lifts and transfers the camper if needed, provides assistance and cheers the camper on to experience new and exciting adventures.
To further ensure campers’ safety, a medical team is on-site at every MDA summer camp. Kristin Moran, LPN at Gillette Children’s Specialty Healthcare in St. Paul, Minn., has volunteered at a local MDA camp for three consecutive years as a nurse and nurse coordinator. “I got involved for two reasons,” Moran shares. “First, I hear my young patients all year long, counting the days until MDA summer camp begins again. But I also realized that I really could serve an important purpose at MDA summer camp. Not only is the medical staff the first to respond if anyone gets hurt, but we’re also in charge of administering the campers’ medications — and that includes a lot of kids. More than 70 percent of the campers are on routine meds, and making sure everyone stays on schedule is essential.”
The week comes at no cost to the campers’ families, as MDA covers the $800 cost per child. And according to those campers and nearly 5,000 volunteers, sponsors and camp administration staff, the return on investment is priceless.
There’s no denying that swimming, canoeing, karaoke, dances and countless other activities create MDA summer camp memories that last a lifetime. Perhaps that’s because the weeklong experience enables campers and volunteers to build lifelong relationships.
Brian Spann, diagnosed with DMD and currently enrolled at Dallas Baptist University, attended MDA summer camp for eight years, beginning when he was 7. Through his counselor, Brian learned the importance of giving back and serving others. “One day it dawned on me that my counselor had missed so many Father’s Days with his own children to be at camp and help me out. Seeing that level of giving taught me a lot about what I value in life, and it has shaped my views as an adult.”
Then there’s the reverse, when campers inspire counselors. “I first volunteered 10 years ago, and I had such an amazing experience that I was hooked,” says 27-year-old Maddie Corrigan. She got hooked on watching campers’ blossoming independence during their week at camp and their enthusiasm to try new things. During summer 2014, as Ben Schussler’s designated counselor, she even got hooked on hooking fish. But on a grander scale, Corrigan’s decade-long MDA camp experience also inspired a remarkable career choice. As a Ph.D. candidate at the New Jersey Institute of Technology, she is now involved in assistive robotic research and development specifically geared toward young boys with DMD. “The kids I’ve met during the years are in my heart forever. It’s what drove me to this career path,” Corrigan says.
Perhaps the most common bond formed between camper and counselor falls under the category of “mutual admiration society,” whereby both adult and child demonstrate equal heartfelt esteem and support for one another — often year after year. That was just the case for Paul Czerlanis, a seven-year MDA summer camp volunteer and also a Lowe’s manager. Czerlanis entered the MDA summer camp world soon after Lowe’s became one of MDA’s national sponsors and an ardent supporter of the MDA Shamrock program, the nation’s largest St. Patrick’s Day fundraiser that unites tens of thousands of retailers to raise money for MDA and the families it serves.
Together, Lowe’s North American customers and employees have raised more than $50 million since the program began to build stronger communities. The money raised by Lowe’s employees and customers has helped send thousands of children with neuromuscular diseases to MDA summer camp.
“I was like so many MDA camp volunteers; once you start going it’s hard to not come back. But I have to say, there was one camper, Jordan Curry, who really pulled me back each summer,” Czerlanis explains. “I was assigned to be Jordan’s counselor when he was 10, and for the next seven years, I watched him change so much. Every summer I looked forward to seeing who he’d become.”
And the changes were big, Czerlanis says. “When we first met, Jordan was extremely shy and timid. It was impossible to get him to do any activity whatsoever. Then the next summer, he would at least watch the activities. Finally, he was up there zip-lining with everyone else. I really admire how Jordan conquered his fears.”
Curry, now 19 and a six-year MDA camp alum, likes to talk about zip-lining, too, but he tells the story from a slightly different perspective. “Zip-lining made me nervous, but Paul saw how much I wanted to do it. And he knew I could do it. So he helped me get up the courage. Once I did it, my only regret was that there wasn’t time left to do it again.”
Each summer, Czerlanis helped Curry become more self-confident, although it wasn’t until Curry’s final summer that he had a life-changing epiphany. “Paul always made me feel confident about myself and my abilities, but I thought that sort of confidence was something that could only happen at camp,” Curry says. “I finally realized that the person Paul saw at camp was me. I am that person. Not just for one week, but every day. That really helped me break open the shell I was in.”
|A group of MDA summer camp volunteers and campers enjoy a paddleboat excursion.|
As with any annual celebration, the MDA summer camp program’s 60th birthday prompts reflection. Looking back, Todd Dewey, a 26-year MDA camp volunteer veteran, is to this day impressed with the way, decade after decade, MDA safeguards the camp’s founding spirit. “I started volunteering when I was 23, and it still amazes me to watch these campers play together — with absolutely no fear of being judged or snubbed.”
Dewey has noticed one significant change that’s helped MDA summer camp progress and grow. “When I first started volunteering, I don’t remember many sponsors and supporters attending camp sessions.” Dewey is referring to the invaluable national and local corporate partners that support MDA research, health care services, advocacy and education programs, including MDA summer camp. Among MDA’s largest sponsors: International Association of Fire Fighters, CITGO Petroleum Corp., Lowe’s Home Improvement, Harley-Davidson Motor Co., Jiffy Lube International, The Kroger Company, 7-Eleven, National Association of Letter Carriers, Casey’s General Stores, Price Chopper Supermarkets and Acosta Sales and Marketing.
“Today, executives from many of these companies attend at least part of an MDA summer camp session and several executives are now weeklong volunteers. That’s so important,” Dewey stresses. “It’s tough to understand the research you’re supporting; we’re not all scientists. But no one can walk onto an MDA summer camp and not see a miracle happening.”
Manolito “Manny” Carrabis, a master sergeant in the U.S. Air Force, has witnessed that “miracle” firsthand since 2011 by serving as a camp volunteer each summer, except for one when he was deployed. And while he gives the kids his all, he insists that he gets back even more. “I’ve been in the Air Force for 21 years, defending our country, and every summer these kids rekindle my fire. They remind me that this is what I’m fighting for — my family, my friends and these kids who may not have been dealt the best hand, yet here they are, living life to the fullest. These kids inspire me. They should inspire everyone.”
Donna Shryer is a freelance writer in Chicago.
Share Your Camp Story
If you’re a camper, parent of a camper, camp alum, volunteer or sponsor, we want to hear your thoughts on why MDA summer camp is so special to you and how it has been a life-changing experience. Send your MDA summer camp stories to firstname.lastname@example.org. For more background on MDA summer camp, like camp photos and videos; FAQ for parents considering sending their children to camp; and information on becoming a camper, volunteer or sponsor, visit mda.org/summer-camp.
Still Time to Sign Up for MDA Summer Camp 2015
MDA is gearing up for Summer Camp 2015. Whether you want to be a camper or volunteer your time, there is still a chance to get involved. For more information, contact your local MDA office at (800) 572-1717.