Real Stories from People Living with Sickle Cell Disease: Blaze Eppinger

Each year, Blaze Eppinger, who works for the Sickle Cell Foundation of Georgia and is a strong supporter of those living with sickle cell disease, works as both a camp registrar and camp counselor for Camp New Hope. Camp New Hope is a 7-day, 6-night residential camp for children aged 7–17 years with sickle cell disease at Rock Eagle 4-H Center in Eatonton, Georgia. Camp takes place every July and is staffed by counselors, many of whom, like Blaze, have sickle cell disease themselves. Doctors and nurses are on hand 24 hours a day, 7 days a week to provide general care for campers and to respond to any emergency situations that might arise.

Camp Activities and Benefits of Attending Camp

Camp New Hope offers all of the things a traditional camp does such as campfires, team-building activities, rock-wall climbing, and kayaking, notes Blaze. The only difference is that activities are supervised by nurses and doctors and include sickle cell-related and transition-related educational programming activities as well. Campers learn how to move through life with sickle cell disease and how to transition, a process of becoming more independent and taking more responsibility for managing one’s health and healthcare. Camp also teaches kids how to stand up for themselves and how to be leaders. “I think camp helps kids with sickle cell disease learn how to maneuver with the disease. It helps them to break out of their shell a bit and become more social,” says Blaze.

According to Blaze, he never got to go to camp as a child, but his friend Sean told him about camp, which inspired him to become a camp counselor and to go as an adult. “The best part about being a camp counselor is being able to interact with the children. Being able to encourage them, lift them up, and have them be able to see their future self in me,” Blaze says. He adds, “It’s very rewarding to watch them [the campers] grow up to be positive, help their community, not be limited like society says they will be, and for me to be able to work with the families.”

Blaze believes that camp has many benefits for the kids who attend, including helping kids become more mature, independent, and social. “I enjoy seeing them mature and find themselves. They become more open, positive, and strong. Sickle cell is no longer something that they try to hide,” he says. “I have seen kids who have never before engaged with anyone with sickle cell disease build friendships and who now can talk to anyone about their condition.”

Other Activities Sponsored by Sickle Cell Foundation of Georgia

In addition to Camp, the Sickle Cell Foundation of Georgia coordinates many activities in which kids with sickle cell disease and their families can take part, including annual walks, skate nights, game nights, and parties—even theme parties like their recent Ugly Christmas Sweater party.

Tips for Kids Living with Sickle Cell Disease and Their Parents

When asked what tips he has for kids living with sickle cell disease, Blaze offered the following:

• Drink lots of water;
• Eat lots of vegetables;
• Stay stress-free so your body doesn’t go into crisis; and
• Live a positive life.

When asked what advice he has for parents of kids living with sickle cell disease, Blaze offered the following:

• Always get a second opinion. One doctor may be more well versed in sickle cell disease than another;
• Get the best available help for your child. Review and compare your options when selecting a doctor;
• Schedule and attend regular doctor’s visits;
• Make sure your child is following his or her treatment plan; and
• Be active in your child’s development and help him or her grow and become more independent.