Twins’ summer camp is also a safety net

The Painted Turtle camp in Lake Hughes affords two preteens with hemophilia the chance to have fun.

Kirin and Bailey Heftye are both handsome, healthy-looking preteen boys. Under a shaded area at an El Monte Starbucks, they frequently interrupt each other to discuss their favorite activities at summer camp.

But they are not your typical 12-year-old kids, nor is the camp they attend each year your average summer camp.

Kirin and Bailey are twins, and the camp they look forward to attending in early August is the Painted Turtle at Lake Hughes. It’s a camp for children affected by serious health conditions including hemophilia, a lifelong, inherited bleeding disorder caused by low or nonexistent levels of blood-clotting protein. The twins have factor XI deficiency, a rarer type of hemophilia. That means that any kind of activity or sport that can cause injuries is usually not an option for them.

“I like being active and I try to get into sports, but knowing I can’t can be sort of annoying,” Kirin said.

Otherwise, the disease isn’t something the twins talk about — not because they are sensitive about it, but because they don’t think they are all that different from the other kids. They follow a loose “they don’t ask, we don’t tell” policy and the friends who do know about their condition share the same attitude as Bailey does: “Whatever. I just want to hang out.”

Kirin and Bailey have the same cropped dark hair and olive skin, but the similarities end there. While Kirin sits upright and talks in a slow, thoughtful manner, Bailey is slouched on his seat, fidgeting often and throwing out cheerful one-liners.

“I have so many friends that they can line up all the way to that building,” Bailey boasted, while Kirin said he was not the most social person and preferred his small but tightknit group of pals.

Their mother, Stacy Heftye, said that attending the Painted Turtle has been good for them. This summer will be their fourth trip.

“The camp gives them something fun to do, and they are surrounded by kids there that have the same thoughts and emotions as them in regards to their health,” Heftye said.

The Painted Turtle provides regular camp activities such as horseback riding, archery, rope climbing and arts and crafts, and every camper, no matter the severity of their illness, is encouraged to participate fully. A staff of medical specialists is always present to closely monitor the kids and, should a crisis develop, a helicopter is ready to ferry any child to a nearby hospital.

Kirin and Bailey said they gained a new sense of empathy as they dined, played and talked with kids whose hemophilia was more severe than theirs. For example, their friend Jack had to have daily injections, and even a simple cut or scratch could put him in grave danger.

“First thing that comes to mind is that I feel kind of bad for them,” Kirin said. “It’s a strange feeling because it’s usually the reverse.”

Through the generosity of Times readers, along with a match by the McCormick Foundation, more than $1.6 million was granted last year by the Los Angeles Times Summer Camp Campaign.

The Summer Camp Campaign, part of the Los Angeles Times Family Fund, a McCormick Foundation Fund, supports programs that provide thousands of Southern California’s at-risk children ages 7 to 17 with enriching, educational and fun camp experiences.

Donations are tax-deductible as permitted by law and matched at 50 cents on the dollar. Donor information is not traded or published without permission. Donate online at latimes.com/donate or by calling (800) 518-3975. All gifts will receive a written acknowledgment.

sophia.lee@latimes.com