Katya Cengel 0000-00-00 00:00:00
Camp in Kentucky Caters to Kids Affected by HIV/AIDS Nehemiah Santiago was doing fine his first day at overnight camp–until his mother left. Then the five-year-old bolted for the door. Devon Boxx blocked his exit. A huge bear of a man with a booming voice, Boxx spoke quietly to Nehemiah and convinced him to stick around. As they headed to lunch a few minutes later, Boxx, a 22-year-old counselor at Camp Heart to Heart, presented Nehemiah with a whistle. “I need a right hand man,” said Boxx. Nehemiah agreed he could be that, and the pair headed to the cafeteria together. It won’t always be so easy. Nehemiah is at Camp Heart to Heart because his mother’s roommate has HIV, the virus that causes AIDS. The camp, located on 185 acres about 25 miles south of Louisville, Kentucky, serves children between the ages of 5 and 12 from Kentucky and nearby states who are infected with or affected by HIV/AIDS. It is one of three free camps run by Lions Camp Crescendo, Inc., a nonprofit founded by a group of Kentucky Lions who purchased the camp facility, also called Lions Camp Crescendo, in 1996. Nehemiah may be too young to understand all this, but Boxx isn’t. Tattooed across his stomach are the words “Fight AIDS” and the name of his mother. Boxx was 15 when he got his first tattoo, a memorial to his father, who died of AIDS and cancer in 1993. His mother died three years ago. Boxx was 8 when she told him she had HIV and 12 when he attended Camp Heart to Heart for the first time. His journey into adulthood hasn’t been easy, but he hopes the campers can learn from his example. “Just because you go through something that’s bigger, there’s still hope. You can still be who you are, who you want to be,” says Boxx, who is studying social work at Kentucky State University. The majority of the campers, about 90 percent, are like Boxx, affected by HIV/AIDS. The others are infected. Camp Director Daniel Coe falls in the second category. He got involved with Camp Heart to Heart so parents wouldn’t feel as alone as he did as an HIV-positive parent in the 1990s. Only a few staff members know which campers are infected and which are affected. Even those campers who are infected don’t always know why they are at camp. There is still a stigma attached to the disease and families often prefer to keep their status secret, says Billie Flannery, administrator of Lions Camp Crescendo. Flannery acknowledged people can sometimes be closed-minded. But she’ll have none of that. When a cook at the complex tried to convince her not to hold Camp Heart to Heart, Flannery told the cook she didn’t have to work the camp. The cook quit, and Flannery held the camp. “I just don’t see anything wrong with having a disability,” she says. When she was young her father lost a leg and four fingers in a distillery accident but he still managed to raise seven children and run a radio and television repair business. Flannery seems to have inherited his perseverance. Decades ago when she wasn’t welcomed at her husband Don’s all-male Lions club, she found another club that would take her. She has been a member of the Frankfort Lions Club ever since. In 1996 when a group of Kentucky Lions bought the camp facility to house a blind and deaf camp, Flannery agreed to administer it for the summer–and never left. In 1999 she helped Beth Eberenz found Camp Heart to Heart. Eberenz’s father, Tom Welker, had been an active Lion. He served as president of Fern Creek Lions Club in 1974, governor of District 43-N in 1982 and was inducted into the Kentucky Lions Hall of Fame in 1992. He also volunteered at a Kentucky summer camp. When he died, Eberenz, who worked for Louisville AIDS Walk, decided founding Camp Heart to Heart would be the perfect way to honor him. “I just wanted to continue his name at Crescendo, and I thought by dedicating this camp to him that would kind of keep his spirit alive there. I think it has,” Eberenz says. The first year there were 14 children. This past year there were 68 children and 67 counselors and support staff including a full-time nurse. Most of the children come from families that live below the poverty level and would otherwise be unable to afford camp, says Coe. The entire one-week camp costs only about $13,000. The counselors and most staff are volunteers. Expenses such as food, insurance and electricity are paid for by grants and donations, many of the latter coming from individual Lions. But Lions and their younger counterparts provide more than just monetary contributions. This year two local Leos served as counselors and Lexington South Lions Club member John Picklesimer and his wife, Mary Ann, gave handmade quilts to firsttime campers. John has been a part of Lions Camp Crescendo since day one so it was only natural that when his wife started making quilts for children with HIV/AIDS in Africa she ended up delivering them closer to home. This year the Picklesimers brought 54 quilts for 30 new campers so that each child would have plenty of options. Niasha Sawyers, 17, was positive her little brother, Nehemiah Ouldelhadj, would choose a quilt with cars on it. But the 6-year-old was drawn to a red quilt covered with dogs, not unlike the canine quilt his sister chose six years ago when she began attending camp. Niasha, who is now a counselor, learned her mother had HIV when she was 11. “At first I didn’t know what to think,” she says. “I still love her just the same.” That night her brother lost his first tooth, and the counselors spread the word to put money under his pillow. In the morning he found $16. The staff do all they can to make up for what campers may lack in material goods and childhood experiences. “They’re having to grow up faster than they should have to,” says Coe, the camp director. “So we’ve given them a chance to just be a child for a week.” It’s a chance to have what Audra Grogg, assistant camp director, calls a “normal” camp experience with arts and crafts, fishing, swimming, a talent show and dance. Like most of the kids, 12-year-old Shane Soto’s favorite activity is swimming. His father, Jose, who is HIV positive, considers camp a chance for Shane “to get away from the inner city” of Louisville and get to know other children who have affected family members. Shane said he doesn’t talk about his father’s illness or even notice it. But at Camp Heart to Heart the reality of HIV/AIDS is hard to avoid. This summer Coe missed camp after becoming ill and ending up in the hospital. In 13 years at least two former campers have died of AIDS-related illnesses. It scares counselor Haleigh Dawson to think some of the campers she is close with may also be at risk. “We don’t know which kids here have the virus, and so you know it could be any of them. It could be any of their moms, their dads,” says Dawson. For 16-year-old Dawson it was a great uncle. For counselor Colleen, 18, it is her parents–and herself. Colleen has been coming to camp from her home in Nashville, Tennessee, since she was 11. It is the one place where she feels normal. When she heads to college, she plans to pack the quilt she was given her first summer at camp. If anyone asks about it she will tell them about Camp Heart to Heart. She probably won’t tell them about her family. Outside of camp and her family she has told only one person. “I don’t want people to judge me or feel sorry for me or anything like that,” Colleen says, “because it’s just something I have to live with.”
Published by International Association of Lions Clubs . View All Articles.