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Thomas Farragher

Open Hearts Camp is a retreat for little survivors

Campers chase brightly colored plastic balls over a lush, undulant lawn in the shadow of Monument Mountain. They sing. They dance. They act silly. They rest. And then something startling happens.

They jump into the swimming pool, and no one gawks. No one asks awkward questions. No one cares about the thick scars that run down the middle of the boys’ bare chests or peek out from the tops of the girls’ swimsuits.

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“It’s almost like a puzzle piece.’’ said Izzy, 12, from Hampden County. “And you fit in.’’

In fact, those chest scars are part of the price of admission to the Edward J. Madden Open Hearts Camp, a Great Barrington summertime retreat for children, a hidden jewel tucked into the Berkshires where for more than 50 years the scars of young heart surgery survivors have faded into the verdant beauty of this valley.

A registered nurse is always on duty. The daily queue for multiple medications is a common bond. And the kids no longer worry about being picked last for any team. They are their own team here.

In a way, like many of its young clients, it’s a wonder this camp still breathes. But like those who sleep in its bunkrooms and romp across its rolling grounds, it has found a way to survive. Its $200,000-a-year annual budget is supported by some charitable donations, but largely by the dwindling trust fund left by Madden, a Long Island real estate developer and an early open-heart surgery patient.

Free until five years ago, the camp reluctantly began charging a $250 fee for its four two-week sessions. It sold 100 of its 400 acres in 2005 to raise money and was climbing toward solvency when it was staggered anew by the Great Recession.

‘We were terrified. We had this kid who literally almost died in front of us four times.’

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“Mr. Madden wanted it as a gift, and we need to keep it as close to his wishes as possible,’’ said Maureen Atwood, treasurer of the camp’s board, who worries when the boiler blows, or the pool leaks, or the balance sheet teeters.

David Zaleon, a genial North Carolinian who worked with children struggling with addiction and poverty before becoming camp director 11 years ago, said the camp continues to meet Madden’s mandate.

“I have never heard a child complain,’’ Zaleon said. “It’s just dumbfounding.’’

One of those kids is 10-year-old Avery Toole of Hopkinton. About 18 hours after she was born in April 2004, a heart murmur was detected. Her mother, Cheryl Toole, a neonatal nurse at Children’s Hospital, knew something awful was happening when they whisked the infant from her maternity suite.

Avery was diagnosed with hypoplastic left heart syndrome, a rare heart defect, and the lives of her parents, Cheryl and Mike, were instantly and profoundly rearranged. Not to mention Avery’s. She had open heart surgery as an infant at Children’s. She had four cardiac arrests in the hospital.

In all, she endured nine operations, the last of which was a transplant that saved her life. The heart that beats in her chest once belonged Dalton Lawyer, 8, of Texas, who was struck and killed by a truck while riding a bicycle on a family vacation in August 2009.

Few parents scrutinized this Berkshire camp for cardiac kids with more intensity than Cheryl and Mike Toole.

“We were terrified,’’ Cheryl told me. “We had this kid who literally almost died in front of us four times. I’m an ICU nurse. I’m neurotic squared.’’

But Avery’s living lesson, like that of most kids here, is this: If you treat me differently, I’m going to live differently.

Instead, she doesn’t have to be told when it’s time to pack for her two-week stay in the Berkshires for a camp like so many others, yet profoundly different just the same.

In fact, she begins in February.

“You’re not the only one here who has problems,’’ Avery said, smiling at her mother.

Then this fragile little girl was off with her friends at a place that knows just how to make her summer glow.

Thomas Farragher is a Globe columnist. He can be reached at thomas.farragher@
globe.com
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