Parker steps to the line, shoulders turned as he reaches down to draw an arrow from his quiver. He fits it to the string of his bow.
Up and down the range, Parker and his fellow campers take aim at paper targets pegged to haybales. Nearby, two counselors sit on either side of a young girl and hold her bow between them. She draws back the bowstring with her feet.
Parker pulls his bow taught with two webbed fingers, firing off his arrow.
And misses.
“Nooo!” cries the 15-year-old, spinning around in exaggerated exasperation.
Parker was born with fused fingers due to Laurin-Sandrow syndrome, a rare genetic condition. As a young child, surgeries helped separate his fingers and therapy improved his range of movement. Eventually, a family friend eventually referred him here, to Camp Winning Hands.
Camp Winning Hands is a free, week-long summer camp for kids 7-17 with limb differences. It was co-founded by UCSF Benioff Children’s Hospital Oakland occupational therapist Ginny Gibson, OTD, OTR/L, CHT. Each year, the project welcomes nearly 100 campers for a week of activities like archery, rock climbing and swimming. Many Winning Hands campers were, like Parker, born with limb differences, ranging from webbed fingers to missing digits, hands or arms. Still, others have lost limbs to accidents.
About three in every 2,000 babies annually are born with a hand or limb difference. For many kids, Camp Winning Hands is the first time they will meet another child with a limb difference.
Gibson works as part of the UCSF Benioff Oakland’s Pediatric Hand and Reconstructive Surgery Center, which provides occupational therapy and surgery to treat a range of hand and arm conditions in children. The center is one of the Bay Area’s busiest, with more than 13,000 patient visits annually. Its integrative approach draws on experts in pediatric orthopedics, hand surgery, plastic surgery and microsurgery to provide a level of care unmatched in most other hospital settings.
Each year, volunteer occupational therapists and nurses from UCSF Benioff Oakland and Shriners Hospitals for Children – Northern California join Gibson in staffing the camp. Shriners Hospitals for Children co-sponsors the camp.
The Taylor Family Foundation is the primary funder of Camp Winning Hands. The foundation supports children with chronic and life-threatening conditions, including hosting them at its specially designed Livermore, California campground.
A unique home away from home
Camp Winning Hands is the only summer camp specifically for children with limb differences west of the Rocky Mountains. Which is why Parker flies in from Idaho each year. This morning, he finished the camp’s “teen talk” before ambling to the archery range. At teen talk, older campers and counselors – many with their own limb differences – discuss everything from learning how to tie their shoes to dealing with unwanted stares.
“A majority of campers have been made fun of; I’ve been called ‘cross fingers,’ ‘sticky hands;’ I’ve been sworn at,” Parker says. “But I’ve gotten a lot of amazing advice from other campers and the counselors.”
“It’s just so much fun connecting with people and learning that you’re not the only one struggling with having a different hand,” says Parker. “And every year when I leave and come back, we all pick up exactly where we left off.”
‘Friends had no idea about his difference because he kept his hand in his pocket’
Camp Winning Hands is in the hills near Livermore, California. From the camp’s dining hall, oak woodlands stretch out below before giving way to vineyards. Mount Diablo looms in the distance.
Gibson sits down at a picnic table near a field where a game of tag just concluded. A gaggle of kids heads off to lunch. Among them is a young girl. Despite the East Bay heat, she’s wearing a long-sleeved black sweatshirt, one sleeve pulled tightly over one hand.
“It’s a classic behavior we see when kids first come to camp – it’s 80 degrees out, and they’ve got a jacket on and their hands in their pockets,” Gibson says. “Typically, those jackets are shed before the end of camp.”
“There might be some worry about exposing the hand that’s different at first, but it’s so much less here because every camper has a hand difference – and many of our counselors do too.”
Gibson co-founded Camp Winning Hands alongside plastic surgeon John Robert Griffin, MD, more than a decade ago, inspired by one of her UCSF Benioff Oakland teen patients.
“He’d recently moved to the Bay Area and came into the clinic because he wanted help to do some weightlifting,” Gibson remembers. “His mother told us that his new friends here had no idea about his hand difference because he kept his hand in his pocket.”
“One of those friends was his girlfriend,” Gibson says, pausing. “The hand surgeon and I just looked at each other and said, ‘We’ve got to do a hand camp.”
Today, Camp Winning Hands is a safe place where no one has to hide or explain their difference, Gibson says, although many campers compare their hands. “That itself is really special because they can just talk openly about it.”
Still, the camp’s main focus is, like any other camp, fun with activities like rope courses, kayaking, swimming and fishing.
“We don’t spend a lot of time thinking about what activities match the needs of our campers,” Gibson says ...
... “Instead, we just think about the activity and then figure out how to modify it so everyone can participate. For that reason, I think a lot of our campers get to do things they’ve never done before.”
Born this way: camping, coping and belonging
For more than a decade, Diana Modica has planned her entire family’s summer vacation around Camp Winning Hands.
Her son, Charlie, was born with symbrachydactyly. The condition typically affects one hand and leads to short, missing and often joined fingers.
Charlie started as a camper at 11 years old. “My favorite day of the year was picking him up from camp because he was completely transformed,” she says. “He felt like he belonged and that he was part of something.”
Diana is active in support groups for parents of children with limb differences. There, she often hears from parents struggling with teens who are angry and resentful of their limb differences. It’s made her even more thankful for Camp Winning Hands. “I just feel like the kids who come here don’t have anger because they have a release for that, a valve they can open when they’re here,” she says.
A congenital condition left Creighton Wong missing fingers on both hands and, eventually, required a partial amputation of his right leg. Today, he volunteers as a Camp Winning Hands counselor.
“When you’re the only kid in your high school with funny hands, it’s real easy to start feeling isolated. Teens can start to think, ‘Hey, no one understands me,’” explains Creighton. “We’re here to try to give them coping skills for the 360 days when they’re not at camp, and that’s not something they teach you in school.”
Now 23, Charlie returns as a counselor each year. “When he was little, he always thought the Lady Gaga song, “Born This Way,” was written for him,” Diana remembers. ”When he came here, he realized that all the other kids thought that too.”
A comfort that no one else can give you
It’s just after dinner at Camp Winning Hands. Most campers have returned to their cabins to grab warm clothes before tonight’s magic act and campfire. As the sun sets, wild turkeys make their way past the dining hall. Inside, 17-year-old JJ is seated at the hall’s piano.
JJ lost his right arm as a young child. Not long after, he discovered a hidden talent. After a friend’s grandmother performed at a piano recital, he wandered up to the instrument and played a section of the song she’d just finished.
JJ, they discovered, has perfect pitch. Today, he plays drums, trumpet and piano with one hand and uses his nose to play the piano’s hard-to-reach higher range.
“ ... I have talent, and I have one hand. But you can do anything if you do your best and work hard.”
JJ, Camp Winning Hands camper
At Camp Winning Hands, JJ can often be found at the piano at meal times, taking requests from the crowd. He writes down songs he doesn’t know and learns them for next year’s camp. He’s even inspired other campers to consider taking up the piano.
“Camp is a place where I can go to and know that I’m not alone in my struggles,” he says while casually playing a few chords. “It’s a community where everyone loves and supports you – it’s like that little comfort bubble that nobody else can really give you.”
But after 11 years coming to Camp Winning Hands, this year will be JJ’s last – before returning as a counselor. A transition he’s looking forward to.
“I just want people to know that I have talent, and I have one hand,” he says, beginning a new melody. “But you can do anything if you do your best and work hard.”