The Enduring Legacy of Bleeding Disorders Camp

Summer is a time of continuing education. A time to take a break from the tasks that are required of you and learn something new. In our community, summer’s continuing education generally involves the rite of passage of heading off to bleeding disorders camp.

As we move deeper into the summer, kids and teens with bleeding disorders either have been or will be going off to weeklong camp experiences where they won’t be the only ones in their circle who are wearing a medic alert bracelet. They won’t be the only ones who must lug around expensive medication. They won’t be alone.

“It’s more than a legacy,” says Rocky Williams, a product of the Illinois hemophilia camp of the 1990s. “Camp is one of the fundamental building blocks of the community.  For a lot of people it’s where we meet each other and where we learn to enjoy being together.”

If you have ever attended Symposium or another bleeding disorders conference, you have likely witnessed a scenario where you will see two grown people bear hug each other and say the following out loud.

“I haven’t seen you in years! How are you?” When pressed, you will learn the two met at camp as young children and share a bond that outsiders cannot readily understand.

At that same conference you can see former camp nurses gather grown men together in the hotel lobby for all-night card games where they swap stories of a time gone by. Lifelong friendships are made at camp. Unbreakable bonds are formed.

Williams, who went on to lead camps across the Midwest, says the impact camp has on bleeding disorders patients is tangible in that it teaches them how to infuse themselves — but camp also gives kids and teens a sense of belonging and pride they will not find on the outside.

“Where else can you go where the entire purpose is to enjoy being together, to thrive being together?” he asks, before adding that honesty is also a large part of it. “You’re super vulnerable. You’re having to be where you’re with other kids who know what you know. I do believe given the chance every kid will take away something from camp.”

Zach Castillo attended his first Camp Ailihpomeh in Texas as an 8-year-old and is now an adult counselor there. He believes the lessons learned go far beyond the bleeding disorders community.

“Camp taught me how to care for others in general. It also taught me a bigger sense of perspective outside of who I am, and my challenges.” Castillo says he learned empathy, teamwork and socialization all in one place.

As for parents who may be uneasy about sending their children off for a week, Castillo and Williams both say that kids are in good hands. Trained medical professionals are always on sites, and volunteer counselors at the camps are made up of patients and former campers themselves.

Plus, for Castillo, the lifelong connections made as the main selling point. “It’s an experience they’ll carry with them for the rest of their lives.”

— Ryan Crowe

_{Ryan Crowe is the new Communication Specialist for HFA. Ryan is a career journalist, a proud blood brother, and longtime volunteer within the bleeding disorders community.}