Campers face their fears and find new friends

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Eleanor Pfister had never been to sleep-away camp before, but the fierce and funny 9-year-old could not wait to get to Camp About Face at Bradford Woods.

The Terre Haute girl didn’t know anyone when she arrived at camp last week, but she left Friday with deep friendships based on mutual experiences.

Camp About Face gives children who were born with cleft lip or other craniofacial anomalies the chance to be themselves, to meet other kids like them and build lasting skills – whether that’s designing the best cupcake in Cupcake Wars, swimming, canoeing, conquering the Tango Tower obstacle course or ziplining.

“Camp About Face has served as a summer camp for kids in the cleft and craniofacial community for more than 35 years, and it’s existed this long for good reason,” said Caitlin Church, Cleft & Craniofacial program coordinator at Riley Hospital for Children and co-sponsor of the camp.

“Outside of clinic waiting rooms, kids with facial differences rarely, if ever, meet others who look like them or have gone through the same experiences,” she added. “Many of our campers have dealt with bullying and teasing. That can all be very isolating, which is why meeting other kids with facial differences at Camp About Face is so important.”

Eleanor, whose friends call her Ellie, was born with unilateral cleft lip and palate and has already had multiple surgeries. She faces another one on Tuesday when surgeons will take bone from her hip to close the gum line in her mouth, so her mom, Jennifer, was thrilled that she could experience camp first.

“This is all she’s talked about; she’s been super excited to go. She loves to meet new friends.”

The experience with cleft lip and palate is challenging for patients and their families, but Jennifer said her daughter has only gotten stronger through it.

“She always pushes through. And at camp she is getting to come face to face with other kids who’ve gone through similar things. For her to be able to see and talk to others who’ve gone through the things she’s getting ready to go through, especially this next surgery, it’s been a good thing.”

When we caught up with Ellie at camp on Thursday, she was having lunch and singing camp songs like, “My name is Bob and I work in a button factory …” Asked if camp was as good as she hoped, she didn’t hesitate before saying, “Even better.”

After lunch, she joined a loud group in the dining hall for cupcake wars, which is not as messy as it might sound.

Except if you’re Shane Williamson, 18, Sellersburg, who is in his last year of camp. He managed to get a cupcake in the face, courtesy of a friend.

Shane, born with a heart defect as well as cleft lip and palate, was adopted by Brent and Laura Williamson as a baby. In fact, the first time they met him was at the Riley Outpatient Center when he was just 4 months old.

He’s been through more procedures than they can count, but he is thriving today, his mom said, graduating from high school last weekend and ready to enroll in Ivy Tech in the fall.

“I’ve been coming to camp for four or five years,” the teen said as he played cards while preparations were being made for a dance/space party Thursday night. “I’ve met a lot of great friends.”

What keeps him coming back?

“The community, the fun, the friendships. A place to express myself,” he said, before he headed off to the outdoor swimming pool to join friends.

Shane and Eleanor are among 16 Camp About Face campers enrolled for this session, which is held alongside a session of Camp Riley attended by about 30 kids.

Church, a 10-year-veteran of Camp About Face as a child herself, said in her personal and professional experience with the program, she’s had the pleasure of watching campers develop their sense of self, grow their confidence, and make lifelong friends.

“Our older campers become role models for the younger ones, learning leadership skills that they take back to their local communities and carry with them the rest of their lives,” she said. “Campers sometimes shed a few tears in quiet moments while sharing their experiences with each other, but there are also lots of tears of laughter throughout the week – both of which are therapeutic. When we say Camp About Face is life-changing, we really mean it. Plus, it’s just a lot of fun.”

Chad Simmons, program director for Bradford Woods, said one of his favorite parts about this camp is seeing the smiles and the impact it can have on people.

“It’s more than the activities we do, whether that’s ziplining, canoeing or climbing,” he said. “It’s about the community that’s formed here, the connections, the relationships.”

Learn more about Camp About Face here. July is National Cleft & Craniofacial Awareness Month.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org