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Area youngsters 'get to just be kids'
By Cheryl Powell
Beacon Journal medical writer
Published on Wednesday, Jun 11, 2008
STRONGSVILLE: Brandon Johnson can't always breathe on his own, but that's not stopping the 12-year-old Portage County boy from enjoying his share of fresh air.
Thanks to a team of doctors, nurses, respiratory therapists and other volunteers from throughout Northeast Ohio, Brandon and other ventilator-dependent children have a camp of their own.
Now in its eighth year, Fresh Air Camp allows children ages 6 to 18 with complex medical problems to enjoy things that other kids take for granted.
From Sunday through Friday, about 30 handicapped campers are exploring a pond, creating crafts, devouring s'mores, riding a horse, taking a dip in a pool and drenching each other in squirt-gun fights at Camp Cheerful in Strongsville.
Volunteers from Akron Children's Hospital, MetroHealth Medical Center in Cleveland, the Cleveland Clinic Children's Hospital for Rehabilitation, and Rainbow Babies and Children's Hospital in Cleveland coordinate the weeklong camp.
''We try to let the campers do things that they otherwise wouldn't be able to do,'' said Diane Jereb, clinical manager of respiratory therapy at MetroHealth and co-director of Fresh Air Camp. ''This is a place where they can get to just be kids.''
The camp is free for all participants, courtesy of an anonymous donor and other fundraising efforts to cover the $3,500 cost per camper.
All the staffers, including the doctors and nurses who are available to care for campers' complex medical needs 24 hours a day, use vacation and personal time to volunteer during the week.
''Typically, families who have special-needs children, they're already financially strapped just to provide what their child needs daily,'' said Dr. Starla Martinez, an Akron Children's Hospital pulmonologist who volunteers as medical director of the camp. ''We really wanted to be able to offer this regardless of the ability to pay.''
Kids on ventilators
Many of the children at the camp have medical problems requiring them to be connected around the clock to a ventilator to breathe. Others, like Brandon, require respiratory support through the night and occasionally during the day. Most are wheelchair-dependent.
Some of the participants were born with medical problems, while others suffered accidents and injuries that left them with neurological damage.
All campers are paired with two volunteers: a trained ''medical buddy,'' who tends to their health concerns; and a ''nonmedical buddy,'' who makes sure the children are able to participate and have fun.
Activities are tailored to the special needs of these special children. Fishing lines and squirt guns, for example, are rigged so paralyzed children can use head movements or even their tongues to participate.
''As part of the application for camp, we ask the children or their parents, 'What's the one thing you want to make sure you do at camp?' '' Martinez said. ''If a child said, 'My goal is to get in the swimming pool,' then we move heaven and earth to make that happen.
''For every child, we want to do at least one thing to fill their heart's desire.''
It took months of planning, the strength of two firefighters and the medical expertise of an emergency room doctor for Lexi Carter, 8, of Navarre, to spent a few carefree minutes in the camp's heated swimming pool on Tuesday afternoon.
Despite occasional raindrops, Lexi and about a dozen other campers smiled as the teams of volunteers — including firefighters and police officers from throughout Northeast Ohio — carefully eased them into the lukewarm water.
Dr. John Pariela, an emergency department doctor from Akron General Medical Center and first-year volunteer at the camp, rhythmically hand-pumped air into Lexi's lungs through a ventilator bag, which temporarily replaced her bulkier ventilator.
''I'm happy for her,'' Pariela said. ''It's a great experience. These kids are wonderful to work with. It's a privilege to be here. I'll be here next year, too.''
Battle with squirt guns
As the sky grew darker on Tuesday, Brandon opted to watch the swimmers by the poolside with his service dog, Beta, a golden retriever.
But he did get a chance to do ''a lot of stuff,'' he said, including catching a 3-inch-long fish earlier in the day and soaking his new friends during a squirt-gun fight on Sunday. (The camp staff equipped the camper's wheelchair with an easy-to-use squirt gun for his weak hands.)
''That's his favorite thing, because he never gets to do anything like that,'' said his mother, Ronna Johnson. ''He can never have a squirt-gun fight like that. It was a total free-for-all.''
The 12-year-old from Shalersville was born with spinal muscular atrophy, a neuromuscular disease that has caused muscle weakness from the neck down.
Ronna Johnson adopted Brandon after learning about him through her job as a registered nurse in the specialized foster care program at the Cleveland Clinic Children's Hospital for Rehabilitation.
She never felt comfortable letting Brandon stay away from home — until he tried Fresh Air Camp as a day camper last year.
The sixth-grader-to-be is looking forward to participating in the talent show later this week and already has picked out the song he'll sing: Umbrella by Rihanna.
''He's getting into adolescence,'' his mother said. ''He wants to do what everyone else is doing. It makes him sad sometimes. That's why this camp is really good. There are so many kids with so many different disabilities. In school, he's the only kid in a wheelchair. Here, being in a wheelchair is nothing.''
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com.
STRONGSVILLE: Brandon Johnson can't always breathe on his own, but that's not stopping the 12-year-old Portage County boy from enjoying his share of fresh air.
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