Summer camp creates virtual experience for kids with rare disease
By: Lauren Casey, WTHR
INDIANAPOLIS — Virtual summer camp is a concept many would have never considered, but the COVID-19 pandemic has made it a reality for kids across the country.
Brothers, 11-year-old Elias and 7-year-old Emmett, who live in Indianapolis, are active boys.
"They both were in competitive soccer, they both love crossfit, they both do karate," their mother, Vanessa Flora said. "When we got the phone call that you know, they couldn't go up there, everybody was really bummed and then it was like trying to figure out what was going to happen for the summer."
Elias started attending Camp Brave Eagle at Camp Crosley in North Webster, Indiana several years ago. This would've been the first time his younger brother would join him on the week-long trip.
Camp Brave Eagle is hosted by the Indiana Hemophilia and Thrombosis Center and Hemophilia of Indiana, welcoming nearly 150 kids with bleeding disorders and their siblings each year. The week-long outdoor adventure camp gives these kids a chance to play, create, and learn alongside their peers while continuing to make memories and friendships that will last a lifetime.
Along the way, interactive lessons on healthy living encourage them to put what they've learned about their blood disorders into practice and share their experiences with other children who are going through the same health challenges.
Both Elias and Emmett have severe Hemophilia A, a serious bleeding disorder that drastically alters their lives. Even minor injuries can cause major bleeding problems.
It runs in their family.
"They lead fairly normal lives except for, when they get hurt, you know, and kind of the fear around that," Vanessa said. "Camp Brave Eagle really provides them that opportunity to be normal kids and have normal camping experiences when most likely they would not be able to attend like a normal sleep away camp."
IHTC's Pediatric Nurse Practitioner, Jen Maahs, or HOII's Director of Community Outreach has been helping with this camp for the past 25 years. She and other medical personnel help to make sure the kids are safe and cared for while away from home.
"We have something for the kids when they learn how to do their medicine. They get what's called a big stick and the big stick is like a coveted thing," Maahs said. "And so when we found out we weren't going to do it, we really wanted to do something to at least reach out to these kids because we missed them."
Organizers put their heads together and created a virtual camp that ran the same week as kids should've been attending Camp Brave Eagle. It started with a care package that arrived with all the supplies and goodies kids needed for camp.
"We sat down together," Flora said. We kind of opened the the boxes together and they were really excited to see some of the things that were in there. There was like stuff for s'mores, there was yarn for friendship bracelets."
Organizers also created daily at-home activities and challenges for the kids to complete during the day and then at night they would conduct a Zoom meeting for campers to connect.
"An activity challenge every day so make an obstacle course, or go on a nature walk," Maahs said. "I had seven nine-year-olds so you can imagine a one-hour call with seven nine-year-olds. So I had a hot dog joke time where I put on a hot dog and told silly jokes. We named our cabin Crazy Cabin and we, they came up with rules."
They also created a Facebook group for the kids to share what they are doing each day. The campers and counselors would comment on the posts for encouragement.
"But you know, they really had a blast with the obstacle course," Flora said. "They turned our entire backyard into this like American Ninja Warrior course."
And after a successful camp week, Maahs says they are now looking at ways to take what they learned from the virtual experience and use that to keep conversations and activities going between the kids throughout the year when they are not at camp.
"So looking at providing ongoing monthly teen hangouts on these virtual calls just because it is a great way to connect," Maash said.
And for kids with a rare disease, connection with other kids like them is key to feeling like they belong.
"You have to remember hemophilia is so rare like there's so few people who have it and they are spread out all over the state," Flora said.
For more information on how your kids can get involved with Camp Brave Eagle and IHTC, go to visit its website and visit www.ihtc.org to learn more about this disease.