Katherine Herrmann, 12, loves summer camp. The weeklong trip each year represents freedom: a time to meet new friends, try new things and gain some independence.
For Katherine, though, camp represents even more. It’s a time to break free of the binds of juvenile idiopathic arthritis (JIA), a painful condition that she’s been burdened with since she was a toddler.
The joys of camp — hiking, canoeing or whispering after lights out — are things Katherine and other kids with chronic conditions may never experience. Their lives are filled with trips to the hospital, tests and treatments.
Thanks to generous donors and the dedicated staff at Cincinnati Children’s, hundreds of medically fragile children enjoy camp each summer.
Camp: A Safe Haven
“At home, my friends freak out if I mention that something hurts,” Katherine says. “They stop what they’re doing and keep asking if I’m okay. It’s really nice that they care about me, but it makes me feel weird, kind of different,” she says. “At camp, no one freaks out.”
Not even when she starts climbing the Alpine Tower, an imposing 55-foot high structure made of telephone poles and ropes. Or when she zooms back down to the ground via a zip line. It’s her favorite camp activity.
Katherine attends Camp Wekandu, which started 29 years ago for children and adolescents with juvenile arthritis. It was the first residential summer camp in the country for kids with arthritis and has served as an example for many other camp programs. In collaboration with Joy Outdoor Education Center in Clarksville, Ohio, Cincinnati Children’s also has camps for children with cancer, sickle cell anemia, hemophilia and other bleeding disorders, heart disease and asthma.
The goal of each camp is the same: to create a safe, fun place for kids to develop friendships with others in similar situations, learn new skills, enhance self esteem and learn the importance of managing their illness.
At camp, kids split their time between structured educational sessions led by nurses and traditional camp activities like swimming, canoeing, archery and a ropes course. Because these children have medical conditions, certain precautions and modifications, such as wheelchair accessibility and a round-the-clock medical staff, are in place.
“We challenge the kids to move beyond their comfort zone, but within a safe and structured environment. We find a way to work with their condition rather than avoid things because of it,” says Michele Rothstein, a camp program director.
Katherine’s mom, Kimberly Herrmann, admits that it was really hard to let her little girl go to camp the first year. But knowing she would be under the watchful eye of nurses and physicians from Cincinnati Children’s and specially-trained camp counselors made it easier.
“I knew they’d take good care of her and see to her medical and emotional needs,” Kimberly says.
Sudden Change, Devastating Diagnosis
For over a decade, Katherine and her parents have placed their trust in Cincinnati Children’s. “Katherine was an active baby,” says Kimberly. “She walked at 9 months. Then, at a little over a year old, Katherine suddenly wouldn’t walk. She started falling down a lot and wanted to be carried everywhere.”
Katherine’s pediatrician referred the family to Cincinnati Children’s, where she was diagnosed with polyarticular juvenile idiopathic arthritis (JIA). Katherine had arthritis in her wrists, elbows, knees, ankles, fingers and toes.
JIA — previously referred to as juvenile rheumatoid arthritis — is the most common type of chronic arthritis in children, which results from the immune system attacking the child’s own joints.
For nearly two years, Katherine wore casts on her legs and splints on her wrists, attended physical therapy and took daily medication to control severe pain. She also had weekly injections of a powerful anti-inflammatory medication.
“To see our little baby go through all this…it was emotionally grueling for her mother and me to watch,” says Steven Herrmann, Katherine’s dad.
Hope for a Pain-Free Future
Juvenile arthritis and related conditions affect approximately 300,000 children in the United States. Once a crippling condition, children today are enjoying the normal activities of childhood, thanks to the strides researchers have made in understanding the disease.
“When I started working at Cincinnati Children’s 29 years ago, most of our patients were in wheelchairs. Now none are in wheelchairs,” says Janalee Taylor, RN, MSN, CNP, associate clinical director for the Division of Rheumatology.
Cincinnati Children’s has one of the largest and longest standing pediatric rheumatology divisions in the country and is internationally known for its research to better understand the genetics of this complex disease.
In the 1990s, scientists at Cincinnati Children’s unveiled a relatively short window of opportunity to intervene — two to five years — before joint and cartilage damage takes root, highlighting the importance of early and aggressive treatment to fight the disease. And the medical center was home to the first clinical trial, and subsequent trials, of a group of very effective new treatments for JIA, called biologics, which target specific proteins in the body that trigger inflammation.
“We aren’t just treating the symptoms anymore. We’re working to stop the chain of events before they start,” Taylor says.
Katherine’s parents are grateful that their daughter has been able to benefit from the strides researchers at Cincinnati Children’s have made over the years.
“Cincinnati Children’s is considered one of the top hospitals in the country. We know that this is where the best and the brightest are,” Steven says.
Together, Wekandu Anything
Camp Wekandu and the other Cincinnati Children’s camps are very important to improving the lives of children with juvenile arthritis, cancer, asthma and other serious medical conditions. They’re fun, but so much more.
“Everyone at camp has what you have or something like it,” Katherine says. “We understand each other’s pain and we help each other.”
|GE Employees Support Camps
In 1952, employees of General Electric started the GE Employees’ Community Service Fund to help those in our community who were having a difficult time. They are still at it today, and the welfare of children is one of their top concerns.
“Cincinnati Children’s cares for children, and our employees care a lot about the hospital,” says Michael E. Fink, president of the GE fund.
The employee fund has supported Cincinnati Children’s since 1955. Their most recent gift to the medical center was $36,000 to support summer camps for children (second grade through high school) with cancer and blood diseases, juvenile arthritis, heart disease and asthma.
“Camps can have a powerful, positive impact on the children’s lives,” says Denise M. Adams, MD, associate professor for pediatric oncology at Cincinnati Children’s. “Without the support of donors, like GE’s employee fund, many of these children would never have this life-changing experience.”
Camps are critically needed yet chronically underfunded. The GE employees’ gift helped to offset the $500 cost per child and to subsidize operating costs such as medical supplies, equipment and food.
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