Decades-old camp gives kids with hemophilia the chance to play and learn

MOUNT VERNON - Ten kids sit at a table under a pavilion. Most of them are laughing and shouting; some of them about the card game they're playing, others about their dates last weekend or their plans for the summer. Just a few feet away, more children and teens are splashing in the pool.

Many of them have one thing in common - they have hemophilia, a disorder in which blood doesn't clot normally.

Jacob Recker, 16, of Iowa City, is among them. This is his 10th year at Camp Tanager's Hemophilia Camp in Mount Vernon, where he and 60 other participants ages 6 to 17 spend a week learning about their bleeding disorders and get a chance to hang out together.

Like most other kids at Hemophilia Camp, Recker doesn't have any friends with hemophilia in his hometown. He said it's nice to be with peers who understand the experience.

The camp is in its 31st year, said University of Iowa Hospitals and Clinics hemophilia nurse Michelle Krantz, who is one of five trained nurses on site. The weeklong overnight program, taking place this week, is a mix of educational activities and traditional camp experiences for kids with bleeding disorders and their siblings or friends.

Many children with disorders like hemophilia and von Willebrand Disease, especially those with more severe diagnoses, don't have an opportunity to attend summer camps because some camp activities, like contact sports, can lead to internal bleeding, said Krantz, who has worked at the camp for 15 years. Plus, typical camp staff aren't trained to identify internal bleeding, which can be life-threatening for individuals with these disorders, she said.

Instead, Hemophilia Camp focuses on showing participants what they can do, Krantz said. Kids at the camp swim, play outdoor games and have the chance to go on an overnight camping trip. But nurses also make sure camp is an opportunity to educate kids and normalize the treatments that people with bleeding disorders rely on.

People with hemophilia lack the proteins that make blood clot, Krantz explained. In the late 20th century, doctors discovered how to manufacture these proteins in a powder form. Today, the powder is stored in vials, and people with hemophilia can mix the powder with water and inject it intravenously to prevent or treat bleeding incidents, she added.

The injection process is difficult to master, Krantz said. Nurses at the camp teach kids strategies to successfully inject themselves, which is outside the comfort zone of many young campers, she said. Plus, older attendees are always willing to help those who are struggling.

'We don't ask for this. They just do it,” she said. 'The camaraderie with these kids is outstanding.”

Hemophilia Treatment Center physical therapist Joel Lee has come to the camp each year for more than a decade to teach campers about musculoskeletal health. He said he's always impressed by how much the participants want to learn.

'The kids are very attentive. They ask lots of good questions,” he said. 'Plus, it's nice to be at a camp setting, out of the hospital.”

Recker has three other siblings, all of whom also have hemophilia. Two of them are at camp with him, and Recker is sure his 4-year-old sister will join them once she's old enough.

'She was so upset that she had to stay home,” he said. 'It might be the same (program) each year, but the people make it worth it.”

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