Six years ago, Jamie Ekstrom reluctantly packed for his first-ever overnight summer camp.
Then 17, he was shy; a self-proclaimed “homebody.”
He had also been recently diagnosed with leukemia and everyone — his parents, doctors, nurses, etc. — encouraged him to go to a special camp for children with cancer.
He eventually acquiesced.
“I fully expected to be back home by Wednesday,” said Ekstrom of Alpharetta.
Yet, the moment he arrived at the sprawling camp site in Morgan County, he felt comfortable, carefree.
He didn’t feel different or funny. He wasn’t a kid with cancer. He was just a kid at camp — running and swimming, making life-long friends, roasting marshmallows.
As Ekstrom explored the new world of camp, he tried new things and learned a lot about himself.
“I felt like cancer and the treatment was the hardest thing I had ever gone through,” said Ekstrom, now 24. “And when I got to camp, I felt like I was willing to try anything. I challenged myself to do things I had never done before, like doing the ropes course for the first time ... rock climbing, horseback riding.”
Camp Sunshine profoundly shaped his life and focus. He stopped being the quiet kid. He went on to be a counselor-in-training and then a full-fledged camp counselor at Camp Twin Lakes.
He grew more confident, more comfortable in his own skin. A recent college graduate, he’s now completing a yearlong fellowship with Camp Twin Lakes, home to Camp Sunshine and several other special needs camps.
“The connections you make with people, it’s just very special and you can see the growth in yourself,” said Ekstrom. “You can surprise yourself.”
This summer marks the 20th summer of Camp Twin Lakes and a year of special events dedicated to celebrating the camp and securing its financial future.
Nestled in the woods of rural Morgan County, about 50 miles east of Atlanta, Camp Twin Lakes serves children with a range of serious illnesses and special needs, from cancer and diabetes to kidney disorders, asthma and burn injuries. It’s one of a handful in the nation designed exclusively for children with extraordinary medical needs.
With an on site, state-of-the art medical lodge equipped to administer extensive treatments such as chemotherapy and dialysis, Camp Twin Lakes serves children in Georgia who may not otherwise go to summer camp. About 3,200 campers will spend a week at Camp Twin Lakes this summer. Over the last few years, Camp Twin Lakes has expanded to include a camp site in Fort Yargo State Park in Winder and a 74-acre spot in Warm Springs.
“It’s well beyond what I hoped it would be,” said Doug Hertz, president of United Distributors Inc., who started Camp Twin Lakes 20 years ago. “I walk around the camp with a smile on my face the whole time watching these kids have a great time and watching these children, no matter what their situation in life is, [have] the opportunity to discover themselves and reach their full potential.”
Seeking a suitable place
Before Twin Lakes, there was no one camp for children in Georgia with special needs. They moved around from summer to summer, trying to secure an available week at traditional summer camps.
In 1989, Hertz, then a board member of Camp Sunshine, learned camp organizers couldn’t secure a place for the summer.
It had long been a struggle securing a suitable place, and the ever-changing location was never quite right. Children undergoing chemotherapy would have to leave the camp for treatment. The same for children with other critical medical needs. In some cases, they missed half of the camp for medical appointments. And several camp organizers were all competing over the same, too-few spots.
Hertz gathered several organizers of camps for children with special needs and asked them, “In your perfect world, what would happen?”
The wish list included each special-needs camp having a designated week; a place with medical facilities and accessibility for the disabled; air-conditioned cabins, specially trained staff, and a place that was both pretty and close to children’s hospitals.
Hertz’s top priority was finding the right location. He met with Georgia-Pacific executives, knowing that the Fortune 500 company was a large Georgia landowner. Georgia-Pacific donated a 110- acre tract they weren’t using in Morgan County. They named the property Twin Lakes after the two lakes flanked by tall pine trees. Georgia-Pacific also leased to Camp Twin Lakes another 148 acres for $148 a year. (Georgia-Pacific has since sold the leased land to Camp Twin Lakes; the company donated money to help cover the cost of the property).
Hertz also met with Atlanta philanthropic groups and local business leaders. Support was immediate. The Woodruff Foundation pledged $1.25 million.
Camp Twin Lakes estimates the cost for each camper is close to $1,000. Through donations from individuals, corporations and foundations, Camp Twin Lakes covers more than 80 percent of the cost.
Camp groups contribute about $165 per camper. (The true cost of the camp for each group can be higher based on staffing needs and other costs). But rates for children are based on ability to pay and many pay only a nominal fee.
Camp Twin Lakes mixes all of the activities campers have done for generations: horseback riding, splashing in the pool, singing camp songs. But campers also experience something else: They learn about their illness, they connect with children facing the same challenges and they learn to step outside their comfort zones.
Dan Mathews, director of camping services, remembered a little girl last year who lost an arm to cancer and who chose to go to the climbing wall. When she got to the wall she was quiet and forlorn. She told counselors she had forgotten when she signed up for the activity that she had just one arm.
But with the help of the staff and special equipment, the little girl reached the summit and rang the cow bell at the top.
“Everyone was applauding and she goes, ‘Wait, now I am going to ring it with my nub.’” And she did.
Campers at Camp Twin Lakes also learn to speak up for themselves, Mathews said.
“Often kids with chronic and terminal illnesses are coddled and not given choices. Everyone does everything for them,” he said. “Everything we do is promoting independence. Even in the dining hall children ask, ‘Can you pass the green beans?’ It’s practicing saying what they need and it’s skills they take home.”
Introvert turns outgoing
Growing up, Paige Phillips watched her younger sister, Stephanie, pack for camp months in advance.
Stephanie loved swimming and singing camp songs and making new friends.
Phillips watched her introverted sister become outgoing.
Stephanie Phillips, diagnosed with Ewing’s sarcoma at age 12, went to camp six summers in a row. She described camp as “heaven on earth.”
“Her first year going to camp, she wouldn’t go anywhere without a wig, but after camp, she was like, ‘It’s OK, I am bald, people can look at me if they want,’” said Phillips.
The siblings went to their senior prom together. Stephanie put glitter on her head.
Phillips herself attended a weekend camp at Camp Twin Lakes for siblings of children with cancer 14 years ago. The camp helped her grapple with own struggle.
“You know why your sibling is getting more attention than you and you feel bad wanting more attention, but you are a child and can’t help it,” said Phillips.
In 2005, Stephanie died at age 18.
“The reasons kids attend the camp are sometimes very sad,” said Phillips, who is now 27 and a program coordinator at Camp Twin Lakes who lives at the camp site year-round. “But the camp is not sad. It’s the happiest place you could ever imagine.”
Number of camps grows
Over the years, Camp Twin Lakes has become home to a growing number of special-needs camps, including children with celiac disease and children who have suffered burn injuries. One camp brings together brothers and sisters living in different foster care homes.
Lucy Cusick, executive director of FOCUS (Families of Children Under Stress), a nonprofit that assists families with children with various special needs, including cerebral palsy, Fragile X syndrome, and mitochondrial disease, started her summer camp at Camp Twin Lakes in 2007.
Cusick said Camp Twin Lakes is ideal. Take pool time, she said.
“An activity time usually lasts 45 to 50 minutes, but we can hardly get all of our kids in the pool in that amount of time, so they work with our schedule and give us two hours for pool time,” said Cusick, whose 26-year-old son has cerebral palsy.
“My son is 150 pounds and our kids can’t walk,” said Cusick. “My son was carried up the stairs. And he got to go down that water slide.”
Camp Twin Lakes is wheelchair accessible — not just in and out of doors, but also in cabins and walking trails. Even the tree house can be accessed by wheelchair.
For the children with burns, shade structures and canopies are set up throughout the camp to protect children — who often have sensitive skin from the burns — from the sun.
‘I learned to reach out’
For Bethany Kinsey, now 24, diabetes camp was a place where she first injected herself with insulin, where she learned about insulin pumps and about finding places on her body for the infusion.
But more than anything, she made life-long friends who help her manage bouts of depression related to her illness.
“I learned to reach out when you are feeling kind of down,” she said. “Type 1 diabetes and depression can go hand in hand. There’s this realization that no matter how well I do today, tomorrow is a new day and I have to do it all over again and again and again. It’s not something that if I exercise and eat right, it will go away. I will always need to check my blood sugar six to eight times a day until there is a cure. I have learned to realize when it’s time for me to reach out for help.”
Kinsey went to nursing school and was recently named medical director of Camp Kudzu, a camp for children with diabetes.
This month, young campers throughout Georgia are preparing for another summer of camp. Eleven-year-old Alexis Whitfield of Canton returns for her third consecutive year.
Two years ago, she injected herself with insulin for the first time at camp. She’s still working on getting more comfortable doing it solo.
Alexis doesn’t have any friends at school with diabetes. Before going to summer camp this year, Alexis turned to her mother and said, “I am going to see my peeps.”
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Defying expectations
Three years ago, Mary Swinn was nervous about her daughter, Emily, going to Camp Infinity at Camp Twin Lakes for a week. Her daughter, who was 13 at the time, had never been away from home. Swinn didn’t think her daughter could do a lot of the traditional camp activities. But her teenage daughter — who has mitochondrial disease, and sometimes uses a walker but mostly needs a wheelchair — did it all, even zip-lining.
“I got a video of Emily going on the zip line and she was so happy, and she had this big smile on her face. I cried. When she came home, she said, ‘Mom, I did things I never imagined I could do.’ And frankly she did things I never thought she could do.”
Emily has returned to the overnight camp every year since.
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About Camp Twin Lakes
● The first camps were held in the summer of 1993.
● Camp Twin Lakes now has three campsites: Camp Twin Lakes Rutledge in Morgan County, the first and largest campsite on 500 wooded acres, which offers the most medically intensive services such as on-site chemotherapy and dialysis; Camp Twin Lakes Will-A-Way in Fort Yargo State Park in Winder; and Camp Twin Lakes Camp Dream in Warm Springs.
● About 3,200 campers will spend a week at Camp Twin Lakes this summer. With the campsites open year-round, close to 9,000 campers, including children and their families, will spend time at Camp Twin Lakes. About 3,500 volunteers, including doctors and nurses, donate their time at the camps.
● “Camp-To-Go” — A day camp at children’s hospitals. The program includes archery (with Q-tips, paint and straws as blow darts), (magnetic) fishing, crafts and games.
● More information, go to www.camptwinlakes.org
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