Annie Eplee spent the first 18 days of her life in the NICU. After suffering in utero blood loss and a brain injury, Annie was diagnosed early on with epilepsy, cerebral palsy, and cognitive developmental delays. The second daughter born to Susan and Kelly Eplee, she “set a new normal” for her parents.
“From the beginning, Annie made us think about the world in a different way,” her father Kelly said. “She set a new timeline. As parents we put a lot of pressure on ourselves, but we knew we had to make it up as we went along and work within her limits.”
Now a 17-year-old rising senior at Monticello High School, Annie has never been one to feel sorry for herself. She’s had years of intensive physical, occupational, and speech therapies, which allowed her to partially mainstream in public school. She had friends who pushed her outside her comfort zone to try things that “looked scary,” like playing kickball with kids who got around with a lot more speed and agility than she could. But even as an outgoing and adventurous kid growing up, all of Annie’s activities were under the protective, watchful eye of her parents. Simple childhood pleasures like pool parties, pickup basketball games, and slumber parties were complicated by the fact that Annie’s medications needed constant monitoring and she could slip into a life-threatening seizure any minute.
So when the Eplees dropped Annie off at Camp Holiday Trails, a nearby camp for children with special health needs, for a two-week session when she was only 9 years old, it wasn’t an easy adjustment for her family.
“I had fantasies of setting up a blind in the woods so I could keep an eye on her,” Kelly recalled with a laugh. “We knew she’d be well taken care of, but she’d just had such intensive care for so long. It was hard to all of a sudden not be needed.”
“It felt like an apendage was missing,” Susan added.
But for Annie, camp was like the missing puzzle piece. It just made sense.
“I fell in love with it once I put my feet on the ground,” she said, fiddling with a multicolored friendship bracelet on her wrist. “It felt like home.”
A growing need
Camp Holiday Trails (CHT), tucked away off Reservoir Road on a hillside so green and lush it’s hard to believe it’s less than five miles from the Downtown Mall, is celebrating its 40th anniversary this year. Founded by three UVA pediatricians who wanted to give their chronically ill patients the quintessential summer camp experience without compromising their health, CHT started out as two separate camps, one for kids with diabetes and the other, respiratory health problems.
Since the permanent camp was established in 1974, thousands of kids with health issues have benefitted, and the list of accepted medical diagnoses has grown to be almost a page long, including cystic fibrosis, cancer, hemophilia, sickle cell, and autism. Week-long sessions are available for entire families to attend camp together, and children up to age 12 can bring siblings along with them for the “young campers” week.
As it continues to expand both its summer and year-round programming, the nonprofit camp, which is funded in part by grants and partnerships with regional hospitals, also relies heavily on monetary donations to cover this past year’s operating expenses of just over $700,000, a number Development Director Heather Mott expects to increase as the camp continues to upgrade and expand.
Mott said a two-week session at CHT costs the camp $2,500 per camper, but efforts are made to keep fees to a minimum—all medical professionals volunteer their time at the camp, for instance, allowing families to pay around $125 per two-week session. Still, camp fees are hardly the only financial burden parents face in sending a chronically ill child to camp every summer.
“The challenges these families are faced with are growing,” Executive Director Tina LaRoche said. “After the camp fee, it’s the gas money to get here. Or they get here, but then they don’t have a bathing suit.”
It’s an ongoing fiscal challenge to keep the camp running for an ever-growing list of diagnoses, but campers, parents, and staff agree the payoff is hard to underestimate.
Local electrician and father of two Chris Shiflet* wasn’t in the very first wave of campers, but he joined the CHT crew in 1975, at age 8, three years after he was diagnosed with juvenile diabetes.
“They had me give my own shot,” Chris Shiflet recalled. “I remember it wasn’t hard, but I’d never done it before.”
He said he doesn’t even remember what it was like to not take insulin shots every day, but he does remember feeling like he missed out on certain things those first few years of his illness.
“That was my first time on my own,” he said of that week of camp in ‘75. “Prior to that I would go stay with my grandparents, but I couldn’t stay with other relatives or friends. Nobody else knew how to give me my shots. I missed out on stuff when I was little, not being able to take care of myself.”
For years his protective mother was by his side, ready to jump at any emergency and administer his insulin at the drop of a hat. But his very first day of camp opened up a whole new world for him.
“They had me give my own shot,” Shiflet recalled. “I remember it wasn’t hard, but I’d never done it before.”
When CHT introduced him to things like canoeing and horseback riding, both Shiflet and his family started to gain confidence in his ability to function like a normal little kid.
“Camp taught me independence,” he said. “It taught me that I could participate in anything I wanted to, and my disease didn’t necessarily control my life.”
Like Shiflet’s illness, Caitlin Farley’s asthma was a lot more common than some of her fellow campers’ diagnoses. Farley was a pretty healthy kid, and she spent her childhood running around and playing sports with the best of them, but at age 9, she landed a scholarship to CHT and found herself surrounded by kids who seemed so much sicker than her. She vividly recalls the first fellow camper she saw after getting out of her parents’ car, a girl who had severe craniofacial abnormalities.
“I’d never seen anything like that before,” said Farley, who’s now 25. “But later that afternoon she kicked my butt in basketball, and we’ve been friends ever since. That was when I learned that diversity comes in all forms.”
With that squeamish first day long behind her, she has since moved up the ranks from camper to counselor, to seasonal assistant director, to full-time year-round program director.
“This place is just so much a part of my life, it’s hard to even begin to describe,” Farley said.
Leaving illness behind
Staff reiterate that camp is about the kid, not the illness. But parents find security in Med Korner, the health clinic that staff refer to as “the heart of camp. It’s fully stocked with medical supplies and equipment, and functions as an on-site hospital and treatment facility. Volunteer medical staff, which include doctors, nurses, and medical students, are on camp 24/7 during the summer. A designated diabetes counter is where kids learn to factor and stick themselves, pairs of crutches in different sizes lean against a wall next to a spare wheelchair, and dozens of pill boxes, one for each camper—and many of the counselors—sit stacked on a shelf, ready to be transported via little red wagon to the dining hall, fire ring, or wherever else the campers need their medicine. The front room is packed with books, toys, and games for idle hands during wait times, but the medical volunteers do everything in their power to keep the kids’ time spent in Med Korner to a minimum.
“You never get to know someone as well as you do when you’re in a camp setting,” Carlos Armengol said.
“We want the kids to participate in camp, not wait in line for meds,” LaRoche said.
For treatments like dialysis or chemo-therapy, staff try to get kids in and out of the clinic before breakfast, during the after-lunch rest hour, or right before bed.
“That allows for the maximum time at camp,” LaRoche said. “We want to take an emphasis off the illness for a while.”
“It’s a really hard job,” Armengol said, noting that he has to be on call 24 hours a day for two weeks. “It can be pretty stressful and tiring, but just to see the campers thriving in a setting like that makes it worth all the trouble.”
Not only does camp provide kids the tools they needs to manage their illness, Armengol added, but it gives volunteers a chance to brush up on their own medical knowledge.
“From a medical side, it’s really fascinating to see a lot of these rare diseases that we don’t see in the office,” he said. “It can be daunting because I’m not a specialist. It’s like refreshing yourself each year on the textbook of pediatrics.”
As a general pediatrician, Armengol said it’s one thing to watch his patients grow up and build a rapport with the families. But there’s something that’s just different about this place, where 10-year-olds and medical professionals alike don tie-dyed t-shirts and friendship bracelets, and nurses take a break to send three little girls sailing between the trees on a giant tire swing.
“You never get to know someone as well as you do when you’re in a camp setting,” Armengol said.
A family affair
In the Flynn family, there are no disabilities—only a different set of abilities, or “difabilities.”
“People come in all shapes, forms, and difabilities,” said 12-year-old Joseph Flynn.
Michelle and Tom Flynn’s twin boys were eligible to attend CHT when they were 6 years old. But medical concerns aside, these parents weren’t about to send their kids off to the woods before they’d even started first grade. That’s where family camp comes in.
“It was really amazing,” Michelle said of the camp sessions open to kids and their parents, siblings, and any other family members who were up for living in a cabin for a week.
For Michelle and Tom, it wasn’t just about playing outside with their kids—it was about watching the boys thrive, and connecting with other parents who understand what it’s like to raise a child with a chronic medical condition.
“Ryan did the climbing wall for the first time, and it wasn’t just us cheering for him,” Michelle said. “Every family was cheering for everybody.”
It was the first summer camp experience for the Flynns, but it wasn’t the first time Michelle and Tom found themselves surrounded by fellow parents of sick children.
“Going up the rock wall the first time, honestly, was scary,” said Ryan Flynn. “I thought I could never make it up.”
Joseph and Ryan were born 12 weeks early, and spent the first few months of their lives in the hospital.
“In the NICU, it’s your own battle,” Tom said, recalling the time of uncertainty while the premie babies fought for their lives. “The other families are friendly and concerned, but it’s just so overwhelming. It’s always a crisis there.”
The Flynns have come a long way since the NICU. Joseph has grown up functioning normally, and Ryan, despite being legally blind, having cerebral palsy, and taking growth hormones, is thriving alongside his brother. A vision specialist stays with him at school, he reads every book he can get his hands on, and he can rattle off a slew of UVA baseball statistics off the top of his head. The first few years of Ryan’s life were intense, Tom said, with more doctor visits and medical treatments than any parents would wish for. But going to camp brought new perspective to the family.
“It gave us the opportunity to see kids who are so much sicker than Ryan,” Tom said. “Compared to some kids, Ryan’s easy.”
He has to hold books and screens inches from his face, and he isn’t as nimble as most 12-year-old boys, but Ryan doesn’t think of himself as being different, and his parents attribute a lot of that to CHT.
“Going up the rock wall the first time, honestly, was scary,” Ryan said, recalling his first camp experience six years ago. “I thought I could never make it up.”
Six years after their first family camp session, the boys can talk for hours about their most memorable counselor (Chip), the best meals in the dining hall (grilled cheese and fruit parfaits), and their favorite camp song (“You can’t ride in my little red wagon!”).
“All kids should have that,” Tom said. “Not just the kids who can run, jump, walk, and see like normal.”
It’s been 40 years since CHT welcomed its first batch of campers. The camp’s summer horse program is back after a two-year hiatus due to the Ragged Mountain Dam construction, several of the 16 buildings on-site have been upgraded, and Shiflet, who attended the recent 40th anniversary celebration, noted that the cabins are equipped with air conditioning units now. He couldn’t help but laugh when parents mentioned how uncomfortably warm the cabins were during the recent family camp.
Some things never change, like the pre-meal belting of “Johnny Appleseed” in the dining hall or weekly campout under the stars at the top of “TP Hill.” But as CHT accepts kids with more and more diagnoses, staff and campers alike are faced with the reality that some illnesses are terminal. The camp has a retention rate of about 75 percent, which is astoundingly high for a program for this population—but some of these kids are really sick.
Lucy was one of the first campers LaRoche met at CHT in 2004. A young teenager with a “firecracker personality,” Lucy had cystic fibrosis, a genetic lung disease, and after several years at camp contracted a life-threatening bacterial infection common to those with the disease.
“It was one of those life moments; I remember where I was standing, what I was wearing when I got the call,” LaRoche said, recalling the day in 2009 when Lucy died. “The sights, the sounds, it’s still so vivid to me. She just had such an incredible personality.”
Lucy’s mother comes to camp each year to plant lilies in her memory, and the whole family returns in the spring for a memorial and celebration.
“In our population we have kids with terminal diagnoses, and sometimes the illnesses take a turn for the worse,” LaRoche said. “To know those two weeks they spent with us every summer had such a strong impact on their lives, that their families continue to stay connected with us, I think is a testament to our work.”
When a camper’s health goes downhill, staff are faced with the delicate task of supporting the family in any way possible, and passing the news to the other kids without casting a shadow on the overall camp experience. An on-site memorial garden serves as a spot for ceremonies, mourning, and reflection, but LaRoche said it’s essential to keep campers grounded and moving forward after a loss.
“It’s simply part of our work, knowing how to help people heal,” she said. “We have to be careful, because we’re talking with kids with chronic illnesses. We’re about resilience, strength, fun, enthusiasm. We don’t want them to start reflecting too much on their own health in a negative way.”
Changed for life
“Camp helped me have the open voice that I do now,” said Annie Eplee.
When Annie came home from her first session of camp eight years ago, her parents almost didn’t recognize her. Their little girl who had previously depended on them for everything came home with a newfound poise and sense of independence, but she was quiet at first about camp. It was her first time away from home on her own, and she kept the experience closely guarded.
“She was kind of quiet and withdrawn,” said her mother Susan Eplee. “And very mature. It was like she had grown up a year during that one week.”
These days, Annie’s eager to share her camp experiences and she rattled off a list of activities introduced to her at camp that she otherwise might never have tried: scaling the challenge course, kayaking, leading the illusive “refrigerator walk” (a highly guarded camp secret). But as she gets older, it’s the unflinchingly loyal and almost seamless friendships that make camp her second home.
“In our cabins, we basically have two parents and our cabinmates. It really is like we’re sisters,” she said. “It’s like we’re one big happy family, just sitting on the back porch together. It feels like a house.”
As far as her health goes, Annie’s never found herself in a medical emergency at camp. But spending two straight weeks among kids with conditions like—and completely unlike—her own has given her some clarity.
“I’ve never had a seizure at camp, but my friend did at the dance. It was weird seeing someone else have a seizure, and I know how it feels personally,” she said. “It was a little scary, but I knew he’d be O.K. Seeing that happen made me realize that the people there really do take care of the campers.”
Annie proudly wears camp shirts all year round, and is happy to make speeches, write letters, and participate in any publicity events for CHT.
“Camp helped me have the open voice that I do now,” she said.
But she hasn’t always been so open about her experiences as a camper. According to her parents, it was years before Annie shared much of anything about camp with anyone. Susan and Kelly are still surprised to hear some of her stories, like this summer in the “blazers” teen program when she ran around during the color war with a young camper, not unlike herself when she was that age, on her back. And in all the years she’s been attending CHT, the Eplees have never gone to a family camp session together. Annie won’t let them.
“Camp was hers,” Kelly said. “Annie needed her thing.”