Camp Open Arms reaches out to kids with limb challenges

William Gephardt can't throw and catch a ball like most children. The 5-year old has unusually thin arms and other physical limitations that affect his range of motion. Sometimes other children tease him.

It’s hard for William not to feel isolated from other kids his age in gym class.

Not so at Camp Open Arms in Monkton, where William and 20 other children with various limb differences played sports and did other activities Thursday — without standing out.

“In regular gym class, he’s that guy,” said Matthew Gephardt, William’s father. “Here, he’s just like everybody else.”

The camp, a collaboration between the University of Maryland Children’s Hospital and the University of Maryland department of orthopedics, was created for young people with limb abnormalities and other physical challenges. It’s a place where children are encouraged to be themselves while building confidence in an environment with others who have similar challenges.

William has a rare condition known as arthrogryposis multiplex congenita and was born with his elbows locked and hands curled inward. His condition greatly limits the range of motion of his arms, shoulders and hands.

The three-day camp was created three years ago by Dr. Josh Abzug, a pediatric orthopedic surgeon in the University of Maryland Medical System.

Abzug, a specialist in upper extremities, said limb differences typically range from congenital, meaning they were present from birth, to perinatal injuries, which take place immediately surrounding the time of birth. These injuries can cause a child to have an arm that is shorter than the other, missing fingers, or nerve damage that decreases range of motion in their arms. For many of these injuries, there is no specific surgical recommendation or cure, he said.

Abzug began to notice the emotional toll these conditions were taking on children and their parents. He said parents worried about their children having “normal” lives and being able to play sports, date and marry. They fretted about them being bullied.

“It really affects the parents emotionally, intensely,” Abzug said. “This isn’t your normal, day-to-day injury.”

He said he was inspired to launch the camp to provide a space for those children to try things they wouldn't be willing to attempt around others who don’t have similar physical challenges. Campers get to play sports, go on hikes and navigate through obstacle courses.

Jaliyah Dukes, a 10-year-old from Baltimore, was born with Erb’s palsy, which left her unable to move her left arm until she had surgery at 8 months old. Physical therapy has improved her condition, but she still needs help with tasks such as zipping up her sweatshirt and tying her shoes.

Jaliyah was passive and somewhat timid around other children before she started attending the camp three years ago, said her mother, Nicole Peck. But being around other children with limb differences boosted her daughter’s self-esteem, Peck said, and she doesn’t try to hide her condition anymore.

“This is a place that she can come to and not be judged and not be bullied,” Peck said. “After the first year of camp, she changed a big, big deal.”

During her second year, Jaliyah met another camper named Shawnashya, Peck said. The girls became fast friends and have even gone on vacation together.

Beyond the obstacle course and other activities, the children are also encouraged to talk about their feelings, Abzug said.

“Our job is to take care of the whole body, not just a hand, but to take care of them emotionally as well,” Abzug said.

He said children with limb differences don’t always receive the same level of attention and resources as children with cancer and other illnesses. He tries to help coordinate other events, such as movies and bowling parties, throughout the year to get them together. There’s also “Family Day” this Saturday, when campers’ parents and siblings can participate in activities and discuss their experiences being the parents or siblings of a child with limb differences. Abzug is expecting 150 people to attend.

Carly Quarengesser, a nurse at University of Maryland St. Joseph Medical Center, is a counselor at the camp, where the staff is all volunteers. She said the private setting provides an environment where the children are comfortable to be themselves.

“You see a switch flip and their personalities come out so much more,” said Quarengesser, who works in Abzug’s operating room once a week. “It’s a pleasure to be able to witness that.”

Alyssa Rhine, 11, was born with multiple bone deficiencies in both legs and has undergone 17 surgeries.

Alyssa said she feels at home at the camp

“It’s neat to know I’m not the only one,” she said. “There’s not many people in the world, it seems, with differences, and I think it’s kind of cool to meet some of those people.”

Her mother, Colleen Rhine, said Alyssa also attends a karate camp where she’s the only child with a physical disability.

People often look at Alyssa and immediately assume she isn’t capable of even basic tasks and activities, Rhine said. She hopes Camp Open Arms helps others understand that people with limb difficulties are capable of anything.

“Hopefully, others will start to realize that the only limitations these children have are the ones we put on them,” she said.

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