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Camp for children with hemophilia

BIG BEAR, Calif. — Kelli Walters sees it about this time every summer, and it never fails to amaze her.

Walters, the executive director of the Nevada Chapter of the National Hemophilia Foundation, spends most of her year working with families of children born with genetic bleeding disorders. She leads a feisty nonprofit that not only spreads the word throughout Nevada about the available medical treatment, but also helps produce a summer camp experience for those medically challenged kids. This year, the group teamed up with the Candlelighters Childhood Cancer Foundation of Nevada for Camp Independent Firefly at the YMCA’s Camp Whittle in the pines above Big Bear Lake.

Approximately 150 Nevada children converged on the remarkable facility to enjoy activities ranging from the summer-tested arts and crafts and campfire sing-alongs to horseback riding, rock wall climbing and even zip-lining. Although most of the children with hemophilia were from Southern Nevada, 10 were transported to the camp from Reno and Northern Nevada.

Walters has been planning and participating in camps for medically fragile young people for nearly 20 years. And each summer she watches the campers, some of whom have been through extremely challenging times, experience genuine joy. In the case of some of the kids with hemophilia, she also sees them become more independent.

There’s no cure yet for hemophilia, but those with the bleeding disorder survive thanks to regular infusions of Factor, which replaces a missing protein in the blood that aids clotting. Learning to self-infuse is essential to gaining independence, but getting the hang of sticking yourself with a needle can be a challenge.

Between all the activities at camp, medical staff instructs the young people in the finer points. And some make the transition to infusing their own Factor.

For them, Walters and her volunteers created the “Big Stick” award.

“Part of the camp name is Independent because until they learn to self-infuse on a three-day week, they really can’t go to a sleepover,” Walters says. “They can’t go places. They can come to this camp because we’re medically staffed for that.”

Those who make the transition “are very proud, and we’re very proud of them. It’s a big deal.”

So is the group’s role in helping children with hemophilia and their families. Although her staff of mostly volunteers is small, the group’s reach continues to grow throughout Nevada. (For more information or to contribute go to hfnv.org or call 702 564-4368.)

That push for independence extends to the group’s Leaders in Training program, in which teenagers learn to become camp counselors. Part of the learning process is taking personal responsibility for transporting their Factor, which must be kept refrigerated, through airport security.

“It was a huge thing,” she says. “Because of all that liquid, everyone had to be bomb-sniffed. But they learned that on their own because that is what they are going to be dealing with when they grow up and they travel, They did all that on their own, obviously with us there supervising them, but they learned to travel and take care of their own medication. It was very cool.”

The group’s Family Education Week takes place in July in Winnemucca. Families are invited to stay overnight and participate in a variety of activities, most of which are information and treatment oriented, but there’s always time set aside for a kids’ camp.

It’s that joy thing again. Life is too hard not to mix in some good fun.

After spending a few days with those brave young people, Walters is physically exhausted, but finds her spirits re-energized by all that joy.

“What goes on up here,” she says, “is really what life is all about.”

Nevada native John L. Smith also writes a daily column for the Las Vegas Review-Journal. Contact him at 702 383-0295 or atjsmith@reviewjournal.com.

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