Self-assurance. Bravery. Perseverance. When you have these things, you can believe in yourself and in your dreams – and do amazing things.
Consequently, supporting and building patients’ self-esteem is part of the work and mission of Shriners Hospitals for Children.
One of the ways Shriners Hospitals does this is through camps, which may be held on-site at the hospitals or in the local communities we serve. They offer activities and experiences ranging from therapeutic horseback riding to skiing adventures. Some camps are designed to encourage patients with specific challenges or conditions, such as hand deficiencies, burns and spinal cord injuries, while others are for a wider range of patients. Like all services and programs at Shriners Hospitals for Children, camp programs are provided regardless of the families’ ability to pay.
While this year’s programs may be adjusted to fit the “new normal” of a world with coronavirus, we are proud of the experiences they’ve provided to countless patients and look forward to the memories yet to be created.
Here are just some of the incredible camp programs Shriners Hospitals offers.
Jonah, 7, was born with Pierre Robin Syndrome, a condition in which the jaw is very recessed, the tongue is farther back, sometimes blocking the airway, and there is an opening in the mouth known as cleft palate. After spending time in the NICU and undergoing corrective surgeries at another hospital, Jonah also had velopharyngeal insufficiency (VPI), where his soft palate didn’t quite close to separate his oral and nasal cavities. It affected the way he learned to speak.
Jonah’s surgeon recommended the family go to Shriners Hospitals for Children — Chicago and be seen by the cleft team. In this specialized program, families see up to 12 specialists in a single visit. Jonah received care from a surgical and follow-up team for several years. Speech Language Pathologist Sarah Richards explained his speech difficulty in simple terms: “Jonah learned to make speech sounds incorrectly to accommodate his VPI.” He receives speech therapy at school and home.
Jonah also received intensive therapy at Camp Smile, a program hosted by the Chicago Shriners Hospital designed for patients ages 5 to 13 who are diagnosed with cleft lip/palate and/or craniofacial differences. The camp uses a theater theme where speech therapists and psychologists help patients improve speech and self-confidence skills outside of direct therapy.
During the camp, Jonah’s self-confidence also improved. “It was really good for him to be exposed to other kids who have challenges similar to him,“ Jennifer said. “He also opens up easily and talks about his feelings in a therapy type environment, so the psychology piece of the camp was great for him.”
For 30 years, Shriners Hospitals for Children — Cincinnati has hosted a special weeklong overnight camp for its patients with burns and other traumas or disorders.
Camp Ytiliba (pronounced ya-TIL-eh-ba, the name is “ability” spelled backward and was created by the campers years ago), gives kids ages 9 to 16 a chance to be around others who understand their experience, to make new friends, and to have fun doing things like horseback riding, swimming, fishing and zip lining. Camp Ytiliba, which is held at a local YMCA camp, is designed to build self-esteem and confidence, giving the campers a time when they don’t need to be concerned about appearance, scrutiny or bullying by others.
Lauren is a junior counselor who spent three years at Camp Ytiliba. Lauren sustained burns over 40% of her body at age 6. She is now a graduate of the University of Cincinnati. “Kids might be missing fingers or toes, but no one makes fun; they aren’t out of place,” said Lauren, explaining why she volunteered. “I love seeing them do things they might otherwise not be able to do. One year, a girl with no fingers climbed the rock wall; another who has lost both arms was able to ride a horse. People cheered. It’s rewarding for me to be a part of that.”
Daniela’s mother will never forget the first year of Un-Limb-ited camp. When she picked her daughter up from the airport, Daniela told her mother the experience was the first time in her life she was able to be herself.
Daniela, who was born with fibula hemimelia, had her right leg amputated below the knee at Shriners Hospitals for Children — Salt Lake City when she was 9 months old. Daniela also had several surgeries and physical therapy over the years at the hospital and received several prosthetic legs.
The hospital-related experience that had the most impact on her was attending the annual summer and winter Un-Limb-ited camps, which are open to teenage Shriners Hospitals patients who have a limb difference. In the summer version, participants traverse through the Utah wilderness on a river trip, and in the winter session, campers spend the week on a mountain in Park City, Utah, learning to ski and snowboard.
“Every year was memorable,” Daniela said, “but since that first time, I definitely enjoyed being myself and not having to hide. I didn’t have to worry about judgment or stares. I’m very grateful to Shriners Hospitals for giving me the chance to accept and love myself.”
Hand Camp, a program of Shriners Hospitals for Children — St. Louis, is one of only a few of its kind in the nation. The weekend retreat, for children ages 6 to 12 with hand or upper limb differences and their families, is a place for attendees to meet others facing the same challenges and participate in all the fun activities that camp offers.
The camp is staffed by multiple hospital departments, including occupational therapy (which also organizes the program), recreational therapy/child life, nursing and care management. Many of the activities are run by YMCA camp counselors at the YMCA Camp Lakewood in Potosi, Missouri.
During Hand Camp, patients have the opportunity to go horseback riding and try archery, rock wall climbing and fishing, as well as take part in team-building games and learn from older patients who are junior counselors. Camp also offers special group meetings for parents and siblings for support, learning and sharing.
The difference these programs make in the lives of our patients can be stunning.