Camp Courage

At a special summer camp, young children learn that they are not alone

Cityscape by Sarah McNaught

Camp Colors looks like a typical summer camp. Squeals of laughter resonate from behind a chain-link fence on the campus of Lasell College, in Newton. Groups of children scamper about the yard, creeping under slides and peeking around jungle gyms. Inside the two-story stucco house, the walls are full of artwork -- finger paintings, handmade bird feeders, beads and buttons glued in patterns to colorful construction paper.

But at this camp, not all the kids can play. Inside the crafts room, one young boy sits on the lap of a physical therapist. He is four years old, but his motor skills are those of an eight-month-old infant. Urged on by camp counselors, the toddler struggles to grab for a set of car keys placed just out of his reach. After several failed attempts, the tot musters all his might. Neck muscles straining, head thrown back in determination, he grasps hold of the keys. A cheer erupts.

Now it is on to an even harder task -- saying "hi." It takes 10 minutes of effort, along with painstaking patience on the part of the therapist, but a soft, sweet "hhhhiiiii" rolls off the tyke's tongue. Another affectionate cheer fills the room.

The little boy has AIDS. At Camp Colors, a two-week summer program for children living with HIV/AIDS, all the campers struggle with illness and more. Many of them come from homes where drug abuse is a way of life. Most of their parents are also sick, so for these kids, Camp Colors is their only distraction from the disease. Seventeen summer programs nationwide are geared toward preteens with HIV/AIDS. But Camp Colors is the only one that caters to children under the age of seven, says Lasell College professor Kerrissa Heffernan, the camp's cofounder and director.

According to the Massachusetts Department of Health, 195 children under 13 have been diagnosed with full-blown AIDS in the state since 1983 -- 58 of them in Boston. This number excludes numerous undocumented cases of children currently infected with HIV who do not have symptoms of AIDS, says Peter Erbland, communications manager for the Aids Action Committee.

The day camp, which is in its fifth year, is a collaborative effort between the Lasell College Center for Public Service and the Children's AIDS Program (CAP), a division of the Boston Medical Center. There are 27 slots available for children up to seven years old. Most of the children are served year-round by CAP, which provides advanced medical, educational, and mental health services to children with HIV. (CAP also operates Amani Village, a camp for older children with HIV.) The kids pay nothing to attend camp; all revenues come from private donations. Camp Colors, which closed for the summer last week, is hoping to find a way to expand even though donations have declined.

The camp is a vital part of these kids' lives. They run; they play; they make crafts for their families. But in between the games, camp songs, and naptimes that make up a typical child's summer day come more-serious activities: taking medication, learning basic motor skills, breathing through oxygen masks, and, in some cases, being fed through tubes in their bellies.

Camp Colors doesn't focus on the illness but on how to live with it. According to Heffernan, many of these kids are stigmatized in their regular lives. AIDS-related disabilities, feeding tubes protruding from their abdomens, and the constant need to disrupt normal activities to take medications make the youngsters seem different from other children. When they are brought together, they realize that they are not alone.

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In the middle of the afternoon, the yard is silent. A green rubber swing sways slightly in the breeze; balls lie where they were left an hour earlier. The kids are upstairs napping under afghans made especially for each child by a group called ABC Quilts, in Lexington. Suddenly, from an open upstairs window, comes one lone squeal of delight. The single voice turns into a barrage of giggles as the little ones crawl out from under their quilts, anxious to begin a second session of outdoor fun.

But before playtime commences, Ginny Courtney has a job to do. It's medication time. The camp nurse stands at the large cloth-covered table in the kitchen, mixing potions, filling syringes, and spooning carefully measured "cocktails" into blue-and-white Dixie cups. She and an assistant venture out into the yard, where the children, still wiping sleep from their eyes, are beginning to gain momentum. One by one they are pulled off slides, out of sandboxes, and away from games of dodge ball to take their medicine.

As strange a scene as it may be, the other kids know what to do. A few preschoolers gather around one child who is reluctant to take his medication. They are not there to taunt, however. "Come on, you can do it," says a boy holding a multicolored basketball in his hand. At last the little patient takes his medicine and is given his choice of treat to wash it down with -- some children want ice cream, others prefer juice.

"They are very interested in what the others are doing or what medications they are taking," says Courtney, who has been a nurse at the camp since it opened. "They are very supportive of each other because they know what it's like to feel different."

Unlike healthy kids, kids at Camp Colors cannot afford to lose weight. "We call it `Camp All You Can Eat' because we encourage them to eat whatever they want, whenever they want," says Heffernan. "When we first opened, we had to promise the kids' pediatricians that they wouldn't lose weight." If a child with HIV/AIDS loses even one pound, Courtney explains, it affects everything from his heart rate to his body's ability to accept medication. "Food has also become a reliable way to make sure all the kids are taking their meds," she says. "For instance, sometimes we hide it in applesauce or yogurt. That way we're fulfilling two responsibilities at once."

Because the kids require so much special attention, Camp Colors has a lower ratio of counselors to children than most summer programs do. The camp has nine paid counselors and three volunteers. All the workers are drawn from a class that Heffernan teaches, and they are trained and certified before they are allowed to work at the camp. The camp's annual budget of $15,000 must pay for salaries, food, transportation, medical supplies, and activities.

"Many times people donate goods instead of money, which is a huge help," says Heffernan. "But at the end of the day, we all wish we could have more money to do more things with the children."

The kids seem to make the most of their time together. For many, loss has become a way of life. One former camper, 10-year-old Ileana Gerena, attended Camp Colors until she turned seven. Her uncle, Israel Gerena, a 44-year-old court interpreter, adopted Ileana when she was three months old; her mother was too sick to care for her. Later, he adopted Ileana's younger sister. The baby, just 17 months old, died on Ileana's sixth birthday from complications of AIDS.

"Camp Colors was a vital part of Ileana's ability to enjoy her childhood," says Gerena. "She has become a caregiver, reminding me of when it is time for my diabetes medication. That's because of camp. She has also learned not to be embarrassed about her medications, her g-tube, or anything else that makes her different, because she now knows kids just like her."

Ileana's interaction with the other campers played a vital role in her ability to accept her illness. And the same is true for most of the children. Seb, now eight years old, described his experience in a poem he wrote when he was at camp last year. The poem is now printed on the cover of the camp's brochure.

I love my camp, a special place for kids
with HIV
and a very fun place to be.
My brave friends are boys and girls.
Some are black, some
are white and some have curls.
Most days they feel good which makes
me feel glad. But
when someone is sick it makes me sad.
I wish people were not afraid of kids
with HIV because
they are just like you and me.
Someday the doctors will find a cure
and then the
whole world will be quite pure.
Then my brave friends with HIV will
be Heros.
In Victory

Victory remains a distant hope for these children. Many are living in foster care or homeless shelters. Some of them never see their parents, who may be involved with drugs or battling their own illnesses. Some kids are so sick or physically disabled that Camp Colors is their only chance to be part of a normal social setting.

But their basic needs are simple, says Kerrissa Heffernan. "They have the right to be children, to be loved, and to realize that life is not just medication and pain."

To make a donation or for further information, contact Camp Colors, c/o Lasell College (617-243-2156), or Sarah Commerford at CAP (617-534-2050).

Sarah McNaught can be reached at smcnaught[a]phx.com.