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‘I’ve never seen anybody like me’: Childhood burn survivors embrace their scars at summer camp

Angel Sierra (second from left) played with his fellow campers before the magic show at The Arthur C. Luf Children’s Burn Camp. It’s the only camp of its kind in the northeastern United States.
Angel Sierra (second from left) played with his fellow campers before the magic show at The Arthur C. Luf Children’s Burn Camp. It’s the only camp of its kind in the northeastern United States.(Jessica Rinaldi/Globe Staff)

UNION, Conn. — The little girl stands in a clearing in the woods, her chin tucked to her chest, her gaze cast down on the sun-dappled forest floor. Beside her, her camp counselor leans close to see her face, searching for the words to ease the child’s fear.

The girl is named Nevaeh, heaven spelled backwards. This is her third day at summer camp. Here on the ropes course this flawless July morning, she watches as one by one, the other four campers in her group all brave the “swing shot.” Each is pulled high into the trees by a line clipped to her back, then soars forward in a wide arc across the clearing. Now her turn has come, and Nevaeh is paralyzed, unable to move or even meet her counselor’s eyes.

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“It’s up to you,” Kelsey Pandiani tells the 10-year-old, her voice calm and gentle, as birds chirp in the pines above their heads. “It’s whatever you want to do.”

The young girl standing frozen in the clearing has known more suffering than any child should. As a toddler, she was seriously injured, suffering second- and third-degree burns on her chest, arms, legs, and one side of her face. She bears the scars, both physical and emotional.

Her counselor knows her burdens, for she has carried them. When she was 7 years old, Kelsey, too, was severely burned, after a shirt she was wearing touched a propane space heater and went up in flames. Like Nevaeh, she endured the interminable surgeries and the stares and the pain they brought her. And she fought to vanquish the nagging, disembodied doubt the fire planted in her.

Now 24 and a counselor each summer at this camp for childhood burn survivors near Sturbridge, Kelsey sees herself in the young girls she cares for, each a tumbler brimming with hope and doubt and nerve. She learns from them, again, how much it took to make her own passage; she longs to teach them what it took her years to learn, and she longs now to help the girl beside her.

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“What if you just try the harness on?” she asks the girl.

But Nevaeh’s shoulders tremble, and she begins to cry. Kelsey reaches for the child whose scars look like her own, and tries to help her find the will to climb, and then let go.

Scarlett Fuentes (center) on a swing set with her fellow campers.
Scarlett Fuentes (center) on a swing set with her fellow campers. (Jessica Rinaldi/Globe Staff)

***

The first summer after Kelsey’s accident, her mother could not bear to let her go to camp. Kelsey’s memories of that time are foggy, but Lynn Pandiani remembers it all, the fear and fierce protective instincts that kicked in after that wintry Sunday morning when her daughter was critically injured, 13 percent of her body ravaged by third- and fourth-degree burns.

The accident happened in the garage at their home in Old Saybrook, Conn., where Kelsey was helping her father stain a door, wearing a long shirt to protect her skin and clothes. When she stepped too close to the propane space heater warming the garage, the shirt caught fire. Flames engulfed her left arm, back, and torso. Her father grabbed her and smothered the fire with his hands.

After that came weeks and months of unimaginable trials. She underwent procedures to remove damaged skin, followed by procedures to replace it — five surgeries in the first six weeks. Doctors used donated skin from a cadaver, then harvested skin from Kelsey’s own thighs. At home, Kelsey needed intensive daily wound care, and constant vigilance to prevent infection. She began years of physical therapy to regain strength and flexibility. Eventually, she was ready to venture back into the world — and then she faced another crushing blow: She could try to put the accident behind her, but the world would not let her forget.

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She endured stares and whispers in the grocery store, the furtive glances cast by grownups more unsettling than the questions children asked (“What happened to your arm?”). Waiting in a long line at Disney World, Kelsey shrank from the unchecked gawking of one couple — until her twin brother, seething with anger, loudly asked his parents, “What is wrong with them?”

She had been a child with verve and confidence. Now she had to stay indoors at recess, avoid the sun, refrain from playing sports. She felt alone, cut off from other people and the life she’d had before, and she could not see how that would change. The keen awareness she had now of the world’s dangers made her different; other kids did not think about such things. By the time another summer came around, her parents understood what a camp for burn survivors could give their 8-year-old, that their family and community could not.

So they signed her up for a week at the Arthur C. Luf Children’s Burn Camp, 176 acres in Union, Conn., on the Massachusetts border, and the only camp of its kind in the northeastern United States. It is named for a Bridgeport, Conn., firefighter who was moved by burn victims he encountered. With a Bridgeport surgeon who shared his wish to help, he created a foundation that launched initiatives such as a new hospital burn unit, fire safety education in schools, and the camp.

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As soon as Kelsey arrived with her parents, another camper came to welcome them, a girl whose scars looked uncannily like Kelsey’s. That encounter, her mother remembers, was stunning: They had never seen another child burn survivor, let alone one whose injuries mirrored Kelsey’s.

Lynn put clean sheets on Kelsey’s bunk bed in the Algonquin cabin, and lingered for lunch, and then her husband, Andy, nudged her: “I think she’s fine,” he murmured. “We should go now.”

Not until two months later, on the first day of third grade, would it become fully evident how much the week at camp had changed Kelsey. When the school bus came for her that morning, Kelsey bounded toward it in clothes she hadn’t worn to school since the accident : shorts and a tank top that bared her shoulders, arms, and legs.

She no longer saw a reason not to wear them.

“I wasn’t asking, ‘Why me?’ anymore,” Kelsey recalls. “I could see it wasn’t as important as I’d thought.”

Counselor Kelsey Pandiani (center) helped to haul a camper up onto the swing shot. Kelsey was badly burned as a child and sees herself in the campers.
Counselor Kelsey Pandiani (center) helped to haul a camper up onto the swing shot. Kelsey was badly burned as a child and sees herself in the campers.(Jessica Rinaldi/Globe Staff)

***

Afternoons at camp unfold slowly, languorously. The sun warms the dry orange pine needles that carpet the woods, filling the air with summery perfume. In the pond, campers splash unselfconsciously as a radio on the beach plays classic rock, lazy jams by the Eagles and the Grateful Dead. The older girls, teenagers in middle and high school, sun themselves regally in the deeper water, drifting away from shore on fat black inner tubes.

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After swimming, Kelsey Pandiani leads her five young campers up a sandy trail from the pond to the showers. Dripping and content, they dawdle as they go, comparing notes from their first roller coaster rides and debating the wisdom of tattoos. They stop to pet the panting camp dog, Tucker. A girl forgets her shoes and balks at a reminder to retrieve them. “I’m your mom for the week,” Kelsey tells her sternly.

At first glance, the camp seems a hotbed of dangers for children still facing complex medical challenges. Their newly grafted skin is vulnerable to sun damage. They are prone to overheating, because they can’t perspire through their scar tissue. Some are missing fingers or whole limbs. Many are still coping with emotional trauma.

From left: Angel Sierra, Scarlett Fuentes, and Nevaeh Abustan took a dip in the pond.
From left: Angel Sierra, Scarlett Fuentes, and Nevaeh Abustan took a dip in the pond. (Jessica Rinaldi/Globe Staff)

But the adult counselors dressed in bathing suits and sneakers are mostly burn experts in disguise. They include burn survivors, burn unit nurses, firefighters, and mental health clinicians. They outnumber the 60 campers almost two to one. And they are all volunteers. Many have staffed the free week-long camp, run by the Connecticut Burns Care Foundation, for decades.

Still, the adults keep their expertise to themselves, offering guidance only to keep campers safe and healthy. The routines and rhythms of the place, steeped in tradition, are the same as those at other rustic summer camps: archery, fishing, skits, songs, crafts — even, to the surprise of some, S’mores and smoky campfires. There are no therapy sessions, in keeping with the mission: to free these kids, if only for a week, from feeling different.

Kelsey settles her campers at arts and crafts. Each gets a canvas and begins to paint. Among them is Haile Martinez, another 10-year-old who survived a raging fire in her Bronx apartment, sparked by a faulty stove. She is quiet as she blends dark colors, overlapping rings of green and brown and blue like the innermost depths of a shadowy forest.

Haile has found a haven at the burn camp. This is her fourth summer, the feisty, brown-eyed girl now a fixture, leading songs in the mess hall after dinner, roaming the familiar trails with sass and confidence.

It feels as safe as any place she knows. At school, she said, she has been bullied because of her scars.

“I’ve never seen anybody like me, with burns, in New York City,” Haile said. “But here I can be very free, without people talking about me.”

Angel Sierra (right) and Haile Martinez laughed as they took on the ropes course.
Angel Sierra (right) and Haile Martinez laughed as they took on the ropes course.(Jessica Rinaldi/Globe Staff)

Stories such as Haile’s forever changed how Kelsey saw her own injuries. Each summer, as she grew into a senior camper and then a counselor, Kelsey became more aware, and came to understand how much she had been spared. She had not lost anyone she loved. She had not survived a war in Syria, or a Russian orphanage. Her injuries had been purely accidental — not every camper could say that. Some were there because someone they loved had failed to care for them. Some had been removed from abusive or neglectful homes after being burned.

At the arts and crafts table, Haile sits up straighter when she spies another camper painting a butterfly onto her canvas. Haile believes — firmly and steadfastly — that any butterfly that flutters near her is a sign sent by her sister Hazel, who was 7 when she died in the house fire that burned Haile.

“I’m always surprised when I see her,” Haile says. “She goes into different bodies. She does magic.”

“Because she’s thinking of you,” Kelsey tells her.

***

Late at night in their bunks after lights out, some campers ask one another questions they have never said out loud before:

Will I ever have friends who understand me?

Will anyone ever love me with my scars?

That was the worry that had once plagued Kelsey. In middle school, as her friends began to date, she feared she never would, because her skin looked different. Then summer came and she returned to camp, that magical idyll where she felt beloved and confident. She found a boyfriend there among the pines, the summer after she started high school, and felt new hope spring up in her.

Trip, one of the campers, took on archery.
Trip, one of the campers, took on archery.(Jessica Rinaldi/Globe Staff)

Like many childhood burn survivors, Kelsey’s treatment didn’t end with childhood. As children grow, their scar tissue doesn’t grow with them. Further surgeries are often required, making it hard to put their burns behind them.

At 15, Kelsey had to return to the hospital for another operation, called a “release surgery,” to add more skin around her shoulder joint for flexibility. Afterward, doctors instructed her to wear tight, uncomfortable compression garments around the clock, for weeks, to protect her healing skin and reduce scarring, as she had done after her earlier surgeries.

But Kelsey had had enough of suffering, and she was old enough, now, to make her own decision. She chose not to wear the pressure garments, accepting that her surgical scars would be more visible as a result.

Pandiani chatted with the campers.
Pandiani chatted with the campers.(Jessica Rinaldi/Globe Staff)

As she grew older, burn specialists offered other tools designed to hide her injuries: special makeup to cover up the thicker, reddened texture of the damaged skin and laser treatments to remove scar tissue. Kelsey understood that for some survivors, these were the right choices. But she wasn’t interested.

“Her view was, ‘This is me’,” her mother says, “and if you don’t accept me, that’s your problem.’”

She steeled herself not to get emotional at camp. It was a joyful place, and not the place to show how much the campers’ stories sometimes broke her heart. There was one day, though, her third year as a counselor, when the enormity of her own journey struck her. It was the last day of camp, the hardest part. There was one girl she’d grown especially close to, a small girl with dark hair cut short and choppy like Kelsey’s had been after fire burned away her long hair. Everything about her had felt familiar: her initial quietness, as though guarding a secret, and then the tiny, incandescent steps she began to take, away from her trauma toward something she couldn’t yet see.

As Kelsey said goodbye and watched the girl walk away, she suddenly saw a younger version of herself. Kelsey felt a rush of overwhelming sadness, mixed with wonder. She had been that girl. And now she was someone else.

***

At the ropes course, in the clearing in the woods, 10-year-old Neveah has summoned her courage and agreed to try on the safety harness. Kelsey leads her to a stepladder, lays one hand on her shoulder to guide her as she climbs up. Then the counselor stands watching from below, reaching one arm up but not quite touching her.

“Are you OK with this height?” asks one of the firefighter volunteers who run the ropes course. “If you are, we could move the ladder back, and you could do a little rocking back and forth.”

A camper relaxed near the wood fire.
A camper relaxed near the wood fire.(Jessica Rinaldi/Globe Staff)

For what seems forever, they wait for her answer. The birds grow louder in the pines, the whine of insects audible. Finally Nevaeh nods, the barest hint of assent, and a counselor pulls back gently on the rope that holds her. She begins to swing, slowly, back and forth — then higher. A shy smile appears. She reaches out to touch Kelsey’s fingertips.

Afterward, the girl hovers close to Kelsey as the firefighters unbuckle her safety harness. “You were amazing,” Kelsey says. She picks the girl up and carries her out of the clearing, Nevaeh’s arms wrapped tight around her neck.

Later, as they sit together on the mess hall steps, Kelsey tries to guess Nevaeh’s favorite thing so far at camp.

“Was it swimming?” Kelsey asks. “Archery? The ropes course?”

The girl is silent, smiling mysteriously.

“The movie last night?” Kelsey tries. “Or maybe you didn’t have a favorite?”

Then another counselor comes to teach their group a game. Everyone gets up to move to a picnic table. As the group disperses, Nevaeh looks up at Kelsey.

“It was when you carried me,” she says.

Pandiani carried camper Nevaeh Abustan back from the ropes course. Kelsey said that after her own first summer as a camper, “I wasn’t asking, ‘Why me?’ anymore.”
Pandiani carried camper Nevaeh Abustan back from the ropes course. Kelsey said that after her own first summer as a camper, “I wasn’t asking, ‘Why me?’ anymore.”(Jessica Rinaldi/Globe Staff)

Jenna Russell can be reached at jenna.russell@globe.com. Follow her on Twitter @jrussglobe.