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Where arthritis is an afterthought

Activities: The Painted Turtle Camp offers an escape for young sufferers

Posted: August 26, 2010 10:33 p.m.
Updated: August 27, 2010 4:55 a.m.

Alexa, Caitlin and Mikayla spend a little time talking at The Painted Turtle camp. According to Mikayla’s mother, Janet, her daughter enjoys the camp experience because “she won’t feel different because something is too painful to participate in or she has to take medication.” Like Mikayla, Caitlin and Alexa suffer from various forms of juvenile...

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Alexa Sutherland, 12, cannot participate in physical education with the rest of her class. Caitlin Ryan, 12, has already had a hip replacement. Mikayla Minnig, 12, had to stop cheerleading for a while.

All three girls suffer from different forms of juvenile arthritis, and for most of the year their respective conditions impact their physical capability, emotional stability and family activity.

About 300,000 kids across the U.S. are affected with arthritis, a condition which causes persistent joint pain, swelling and stiffness.

For young arthritis sufferers, life is a balancing act between enough — and too much — physical activity. Added to various combinations of intravenous infusions, surgeries and medications and you get a category of youngsters who have already endured too much for their age.

But for one week a year, Alexa, Caitlin and Mikayla get to just be kids. At The Painted Turtle, a 173-acre summer getaway and family care center in Lake Hughes, the girls join about 115 other youngsters at the Arthritis Foundation’s Camp Esperanza.

Campers fish, play games, swim, canoe, dance at parties, pillow talk, climb ropes and build friendships.

Of course, the arthritis doesn’t disappear, but to Alexa, Caitlin and Mikayla — three young, vibrant blondes who call themselves the Mickey D Group — it becomes almost nonexistent, especially when they’re on the ropes course.

“You forget about arthritis,” Mikayla said. “Everything that holds you back doesn’t exist when you’re in mid-air.”

Joint pain, family strain
Alexa, from Monrovia, was diagnosed with Juvenile rheumatoid arthritis at age 15 months. Caitlin, from Long Beach, has suffered from systemic idiopathic arthritis since she was 3 and Mikayla Minnig, from Downey, received her diagnoses of pauciarticular juvenile idiopathic arthritis at age 3.

The girls deal with three different forms of a condition that impact their families in similar ways.

“When she’s at home and hurting and lying on the couch, it consumes our whole life,” said Mikayla’s mother Janet Minnig.

Janet said she knows the arthritis can’t consume the family’s thoughts, but it is not easy to ignore.

“She literally went from doing a round-off back hamstring one day to couldn’t walk the next day,” Minnig said. “That’s how active she was until this last flare-up.”

A couple of weeks ago, the Minnigs had to ditch a family reunion.

“She was so stiff and in so much pain, we just couldn’t make a family car ride,” Minnig said.

Colleen Ryan said her daughter Caitlin has missed many school days and activities because of her arthritis.  Caitlin’s arthritis has left her cheering from the bench during many softball games.

Alexa’s plight isn’t much different. Alexa takes extra time than her peers to walk her large school campus and the visits the hospital once a month to receive IV infusions to reduce pain in her knees, ankles and hips.

Mikayla was recently getting two injections a week, plus daily medication. Her doctors “had to put her on steroids just to get her to have enough energy to go to camp,” Minnig said.

“Mikayla is so active; when she has her arthritis flairs she seems like a whole different person,” her mother said.

During those times Mikayla’s life is put on hold. No cheerleading, no gymnastics and no playing.

“That’s what makes her feel so sad and isolated,” Minnig said. “That’s why camp is so important.”

Forgetting about arthritis at camp
Mikayla, Alexis and Caitlin each waited their turn in line, giggling, smiling, or guessing answers as they prepared to take their turn at “Hitchhiker.” In the camp game, each of three kids pretending they are seated in a “car” takes on the personality of the “hitchhiker.”

“You see kids who might be quiet and shy and they get into an activity; they come out of their shell,” said Natascha Skerczak, an Arthritis Foundation program director.

The staff and volunteers at Camp Esperanza are committed to providing a safe, nurturing and medically-supervised environment for the campers.

The Arthritis Foundation hosts two summer camps. Teens from age 15 to 17 will gather at YMCA Camp Whittle in the San Bernadino Mountains in late August. Children ages 7 through 16 visited The Painted Turtle, a Hole in the Wall Camp for children with chronic and life-threatening disabilities, from July 17 to 22.

“It’s a getaway; it’s a chance to explore a camp environment but still have medical staff that can give them their medications,” said Jennifer Ziegler, program director. “And it’s a chance for them to meet other kids just like them — for them to be around others with the disease but not have to explain it.”

Camp staff and volunteers keep medical care in the background. For example, the Well Shell is the camp’s medical hub that doesn’t look much like a typical hospital.

“It’s medical care incognito,” said Gina Jansheski, the camp’s medical director.

Stuffed monkeys and exotic foliage camouflage the walls. The emergency and care rooms each have their own jungle themes.

“A lot of these kids spend a lot of time in the hospital, so we don’t want to make it a place that’s uninviting,” Ziegler said.

Counselors even bring their campers’ medications to meals so that the kids can take them at the same time. When certain medications cannot be taken with the rest of the group, counselors go out of their way to ease the process.

On one of the nights, Alexa’s camp counselor brought her three pills instead of the four she is supposed to take.

Alexa said she was surprised and grateful when the volunteer walked “all the way” back down to the medical center to get her fourth pill.

“Everyone’s so sympathetic here,” Mikayla added.

The other kids, staff get it
The Minnig family celebrated Mikayla’s birthday at the beach a couple of weeks ago. Mikayla romped in the water and laughed with her friends, until she couldn’t play anymore.

She wandered back to the beach and gave her mom the look — the one that says: “I’m hurting.”

After Mikayla rested for a few minutes, her friends began to beckon her back to the water. But Mikayla just couldn’t play anymore.

Mikayla said to her mother: “They just don’t know, Mom.”

But when Mikayla is at Camp Esperanza, her friends do understand because they’re all — to some extent — like her.

“When they’re at camp, the other kids get it,” Janet Minnig said. “She won’t feel different because something is too painful to participate in or she has to take medication.”

Mikayla, Alexa and Caitlin have a bond that the girls feel they can’t share with their other friends.

“They don’t understand that medication or the pain,” Alexa said of her friends at home.

Mikayla finds comfort in the fact that she can send a text message to Caitlin or Alexa in the morning and simply say: “I’m really sore today.”

“It lets you know that other kids are going through the same things that you are,” Mikayla said.

That kind of bonding over pain, medication and fun camp experiences makes for lasting friendships. The “Mickey D Group” agreed that they would miss each other the most when they left camp.

“I’m going to miss being with friends that have the same disease as me — people who understand,” Caitlin said.

Camp fun, family relief

When they’re not at Camp Esperanza, the Mickey D girls pro-actively engage in their own battles against arthritis and find ways to help other kids experience camp.

Mikayla testified in front of Congress last year on behalf of children like her with juvenile arthritis.

Alexa and her parents have supported the Arthritis Foundation since she was a toddler. She also sells lemonade throughout the year to help other kids attend camp.

Caitlin led a top fundraising team to raise more than $165,000 for the 2010 National Arthritis Walk.

She has also raised money to help others like her attend Camp Esperanza.

Camp may only offer a brief period of worry-free fun, but to Alexa, Mikayla and Caitlin the memories are long-lasting.

“She spends so much of her regular life compensating for (the arthritis),” Caitlin’s mother Colleen Ryan said. “When she’s there she doesn’t have to worry about hiding it and therefore, it doesn’t inhibit her in any way.”

Ryan said there is an obvious difference in Caitlin’s well-being when she returns from camp; she’s confident, energetic and happy.

“She comes home with her motor running at full,” she said. “She’s just got so many great stories to share.”

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