Unlike other camps for sick kids, a year-round retreat in Casco aims to address the impact on the entire family.
- By: Cynthia Anderson
The scene is timeless: two orange-vested boys in a kayak, an expanse of blue water behind them, and ducks skirting the surface for takeoff. The sun shines, hides, shines again. Other kayaks and canoes dot the cove at the northern end of Sebago Lake. Those with daring occupants move toward an island, while the cautious hug the shore. The two boys are in between — although based on the enthusiasm with which they’ve been exploring camp, they’d be farther out if they could master their technique.
“Stop driving,” says the dark-haired one in the stern. “Let me do it.”
“I’m not driving. I’m steering.”
“Then stop steering.”
“We’re headed for the reeds!”
“I’m having a few problems back here.”
A counselor overhears them from the beach. “You guys good?” he calls. “Need any help?”
No, they tell him, they’ll figure it out.
And they do.
The boys — Devin Fales, from Keedysville, Maryland, and Amitai Atzmon from a suburb of Tel Aviv, Israel — are nine years old, but they won’t mind if you think of them as ten because, as they’ll later explain, both of them are “very close” to that anyway. They met five days ago at Camp Sunshine (www.campsunshine.org), a year-round retreat in Casco for children with life-threatening illnesses and their families.
Founded in 1984 by Larry and Anna Gould, who own nearby Point Sebago Resort and who have given several million dollars to fund the camp’s construction and endowment, Sunshine has provided services to more than 25,000 ill children, their siblings, and parents. Unlike other camps for sick kids, Sunshine aims to address the impact of serious illness on the family as a unit and as such is becoming a model for facilities like it nationally and abroad. The week-long sessions are condition-specific: cancer, kidney disease, brain tumors, lupus, organ transplants. Each family is sponsored by an individual, corporation, or foundation, which means no one pays to attend or to stay in the decidedly non-rustic, air-conditioned suites that sleep six.
Camp Sunshine is a place where the whole family is cared for,” says Alison Friedmann, a pediatric hematologist and oncologist at MassGeneral Hospital for Children in Boston. “Many of these families can’t just pick up and go on a regular family vacation. Here is a place where everyone ‘gets it,’ where the medical issues can be attended towithout overshadowing everything else.”
This particular session is set aside for Fanconi anemia, a rare genetic disorder that predisposes those who have it to an array of medical conditions, the most serious of which is bone marrow failure. About three hundred people have gathered on the twenty-three-acre Casco campus — ninety volunteers plus fifty-four families, some from as far away as Australia and Colombia. On the camp dock, Devin’s parents, Curt and Crystal Fales, stand watching the boys make their way in the kayak. They express amazement at the bond Devin and Amitai have forged, their near-instant camaraderie and inseparability. They marvel, too, over the physical resemblance the two share — including small stature and similar bone malformations. Both Devin and Amitai have Fanconi anemia, and both have undergone bone marrow transplants.
While Devin plays and his two-year-old brother is cared for in the Tot Lot, Curt and Crystal attend sessions that provide new information about Fanconi or stroll the camp grounds, often bumping into other parents along the way. In the four summers they’ve been attending, any trepidation they felt about coming to a place where everyone else had a child with the same illness — some sicker, some less sick — has given way to a deep sense of comfort. The isolation they’d experienced since Devin’s diagnosis — “You’re on your own. You have to inform everyone around you,” says Crystal — dissipated in the first session as they watched him relax into a group of other kids who had the same familiarity with Fanconi that he did.
“He wasn’t the short one anymore. He wasn’t odd. He was just a kid,” says Crystal.
Those who attend learn about Camp Sunshine in different ways, sometimes through medical professionals, more often through other families who have been before. Kristin Young, who lives with her family in nearby Gorham, heard about it from her father after he read a newspaper article. The Youngs’ third child, an elfin five-year-old named Wesley, was diagnosed with Fanconi anemia at age one, but not before the family had seen a host of doctors for his many medical problems, including skeletal abnormalities and fused kidneys.
In the camp dining hall — an airy space dominated by a bank of windows and a large stone fireplace — Wesley orbits the tables, tickling, being tickled, and giggling at any joke that comes his way. “We walk through the door, and it’s like he owns the place,” says Kristin Young. “We see the same people year after year.”
In addition to shared experience, another reason families are drawn to Sunshine is that unlike other camps for children with life-threatening illnesses, this one reaches out to all members of the family and to the siblings of the affected child in particular. Wesley Young’s twelve-year-old brother, Collin, says he looks forward to Fanconi week all year. “It’s basically my favorite thing,” he says. “Other people who are my friends here have brothers and sisters like Wesley, so you can relate. And there’s a lot of great stuff to do.” By great stuff Collin means the rock wall, the pool, a ropes course, an eighteen-hole mini golf course, amphitheater — and, of course, Sebago Lake. Last night he slept in Pop’s Yurt Village down near the lake, along with Amitai and Devin and the other eight-to-twelve year olds.
The group cooked dinner outside, roasted marshmallows, and hung out by the fire. And surprisingly enough, no one got much sleep. “We went to bed, if you can call it that, at about 1 a.m.,” says Amitai. “But it was really worth it.”
A group photo taken after lunch says much about the camp. Everyone crowds together — families, staff, and volunteers, friends holding hands, and kids in the counselors’ laps. “Where should I go?” calls out Bobo the clown, to a chorus of “Over here! Over here!” There is laughter and shouting as a woman with a megaphone attempts to direct. Amitai and Devin stand together, Devin’s arm slung over Amitai’s shoulders, while Wesley Young sits on his father’s shoulders. Kristin Young stands near a woman from Tennessee whom she convinced to bring her daughter to Sunshine for the first time. The two stayed with the Youngs in Gorham before camp started.
Taken every year to chronicle the event, the group photos show families growing up, children getting bigger, volunteers returning year after year. Occasionally, a child who was present one year is absent the next — either having passed away or having grown too sick to attend. This is the sad part of Camp Sunshine, and perhaps the specter that gives the palpable joy of the place its sharpness and depth.
For weeks before Devin Fales had his bone marrow transplant, Curt lay in bed every night with him, explaining what was coming. “Devin knew he was getting sicker,” says Curt. “He was tired all the time. He wanted the transplant. I told him, ‘You know, babe, things might not go the way we want them to.’ He understood what I meant. He said, ‘I know, Dad, but I want to be like the other kids.’ When it came time for the radiation, he lay completely still. He was so prepared.” Curt’s eyes well. “It was his life, and did he ever know it.”
It’s difficult to be part of the camp and not feel a sense of urgency. Erica Finegan, a twenty-two-year-old mechanical engineering student, has been volunteering for five summers, the first time as part of a contingent from Holy Name Central Catholic Junior/Senior High School in Worcester, Massachusetts. “This place means the world to me,” says Finegan. “When I leave here at the end of a session, my ride home begins the countdown to next year.” Each summer she applies specifically for Fanconi anemia week because “everybody knows each other and we want to be together.”
Volunteers — many of whom return year after year — come to Sunshine from school and church groups, as well as from a host of civic organizations. Others are drawn to the place on their own. Dot Gonyea, of South Portland, began working at the camp when it first opened, spending seventeen years washing dishes in the kitchen. After she’d finished cleaning up from a meal, she would walk over to the Tot Lot to hold fussy babies or to push them in strollers around the campus grounds.
As children in a nearby alcove practice their song for an upcoming talent show, Gonyea struggles to find words as to why the camp matters so much to her. She points out that she went from being unsure that she was “the right type of person” to work with ill children to feeling certain she had something to offer. Three of her grand-children have since volunteered with her. The kids’ voices rise: “We wish Camp Sunshine wouldn’t end. We don’t want to leave our friends. Our parents brought us here, not knowing what it was, and they’ll continue coming here forever just because. . . .” Gonyea surveys the children, several of whom hold lettered signs that spell out S-U-N-S-H-I-N-E. She takes a deep breath. “There’s no place like it,” she says.
The sense of personal value the place imparts to the camp staff extends through all levels. Anne Davis, managing trustee of the New Balance Foundation, which has given more than three hundred thousand dollars to Sunshine, says the shoe manufacturer has proudly supported the camp since 2000. Employees at the Norway, Maine, manufacturing facility regularly volunteer at the camp, and Davis says the company values it as an incredible resource. Indeed, a host of foundations and corporations have helped finance construction and endowment projects in recent years. Recently, the Hannaford Charitable Foundation and JTG Foundation each donated a hundred thousand dollars to assist in building a $1.5 million addition, and the TD Banknorth Charitable Foundation gave two hundred thousand dollars to the camp’s endowment fund.
Founder Anna Gould says her commitment to the place was cemented more than twenty years ago, as the first session was ending. “There was such a transformation in how the families looked when they arrived compared with how they looked by the end,” says Gould. “They were rejuvenated, prepared to continue their journeys. There was no question that [the camp] had to continue as a place where families could come as a unit, to have
respite and the opportunity for shared experience and shared memories.”
Matthew Hoidal, Sunshine’s executive director, says he found himself getting more and more involved after he designated the camp as beneficiary of a marathon he ran while in law school. Like Gonyea, Hoidal struggles to explain what the place means to him. A couple days after the interview, he sends an e-mail. He’s been thinking about incidents that moved him, he says. “I was sitting at one of Nancy’s [psychosocial director] campfire sessions with a teen group,” Hoidal writes. “The kids were being typical teens — boisterous and teasing each other . . . Then, after Nancy quieted them down and got them talking, one sibling put his arms around his sister, who was the sick child, and said, with tears, ‘I love my sister so much and am so proud of how strong and courageous she is.’ It gives me goose bumps just writing this e-mail, remembering how I felt in that moment. These kids went from being typical teens to showing a sensitive and loving side . . . all in a matter of seconds.”
Back at the lake, Amitai and Devin are getting out of the kayak. “Oh, no, my pants are soaking wet,” says Amitai as he steps ashore.
Devin surveys the damage. “You’re right, they are,” he says.” He thinks. “I know, borrow my jacket and wrap it around your middle. That’ll keep you warm.”
Indoors, the two head for the cafeteria for juice and cookies. They find a table, settle down to describe the inception of their friendship: “We got here to our places [in the family units] at the same moment,” says Amitai. “When I heard his name, I thought, ‘Well, that’s a little weird,’ but I also liked it.”
“I thought that, too,” says Devin. “The first day I was a little shy. The next day I made him laugh.”
Amitai nods. “At first I thought, ‘He is nothing like me.’ Then I found out that he is.”
Devin nudges him. “Let’s show her our thumbs.” And there they are — small, a little misshapen, and, sure enough, identical.
Photography by Hannah Welling.
You can contribute to Camp Sunshine's ambitious $250,000 matching grant fund here.
- By: Cynthia Anderson