Real Stories from People Living with Sickle Cell Disease: Alissia Cofer

Alissia Cofer is a former camp director at Camp Cell-A-Bration, a free, week-long camp in Burton, TX, for children aged 6–14 with sickle cell disease (SCD). Alissia is no stranger to camp; she was a camper herself as a young girl with SCD.  Her participation at Hole in the Wall Gang Camp in Ashford, CT, as a child is primarily what inspired her to work at camp herself.  Becoming a camp director enabled her to connect with kids with SCD more and to give back to the sickle cell community.  “Becoming a camp director allowed me to give them (the campers) what I had growing up.  They were all my babies, and I was responsible for them.  I knew them all by name, and I knew their parents. When I saw their faces lighting up, I knew that I was doing what I was supposed to do.” said Alissia.

Camp Activities and Benefits of Attending Camp

According to Alissia, camp offers kids a variety of indoor and outdoor activities, including horseback riding, ropes courses, ziplining, bike riding, archery, paint ball, basketball, yoga, canoeing, fishing, escape rooms, swimming, rock wall climbing, and singing around a campfire.  It also includes time for just hanging out in the cabins and bonding with one another. Learning more about what it means to have SCD and how to best manage the condition is also included among the many activities camp has to offer. Small group discussions are held to let the kids learn more about the different types of SCD, talk about challenges associated with having SCD, talk about the various therapies, and simply to provide a forum to answer questions campers may have about SCD.  According to Alissia, one of the biggest impacts camp has on attendees is that it teaches them to become more active in their care. “They are listening and taking it all in,” she said.

According to Alissia, other than a small $25 application fee, attending camp is completely free. A full medical staff is available to care for kids at camp, and there is a hospital emergency department approximately 5 miles away.  Campers enjoy the experience so much they tend to return year after year; many also choose to become junior and senior camp counselors.  Tight bonds are formed, and campers maintain close connections even after camp by staying in touch with each other by texting and using social media.

Overcoming Challenges Related to Attending Camp

Despite the benefits of attending camp, campers may also face a few challenges, the most common of which is feeling homesick.  For many campers, this experience is their first time away from home and they may miss their families.  To help, parents can send emails and telegrams to their kids and the older staff try to ease the nighttime transition for these children. In general, however, camp is a time to unplug; therefore, no TV, no phone, and no Internet is allowed.

Getting sick is also a challenge a camper may face at camp.  To help prevent a camper from having to go home or to the hospital, camp counselors try to build in enough down time and cabin time to let campers rest and recover from all their activities.

Tips for Kids Living with Sickle Cell Disease and Their Parents

When asked what tips she has for kids living with sickle cell disease, Alissia offered the following

• Stay hydrated.
• Stay warm.
• Get plenty of rest.

When asked what advice she has for parents of kids living with sickle cell disease, Alissia offered the following

• Be there for them.
• Listen to them and provide them with support.

Where Is She Now?

Alissia lives in Austin, TX, and works for the federal government at the U.S. Department of the Treasury.  She is also actively involved in the Sickle Cell Association of Texas Marc Thomas Foundation.