A fantastic camp experience for kids with unique health conditions

Nesma Aly

Nesma Aly is a summer intern at the Division of Budget and Financial Management at the NIH, and she fondly looks back on her experiences at Camp Fantastic. Horseback riding and cooking classes were among some of her favorite activities; she most notably recalls a class in which campers learned how to groom and care for horses. Beyond the wide offering of activities, the camp atmosphere and people drew her back each year. Now she hopes to return in the future as a camp counselor.
Photo by Chloe Gansen.

Believe it or not, camp was a favorite part of summer for Nesma Aly from 2008 to 2016. When Nesma was nine months old she was diagnosed with osteopetrosis, a rare congenital disorder in which bones become prone to break easily due to an imbalance in bone formation and breakdown. As a result, Nesma has received multiple bone marrow transplants and faced additional complications, including graft versus host disease (GVHD) and optic nerve atrophy that resulted in blindness. While staying at the Children’s Inn at the National Institutes of Health (NIH), Nesma received treatment from Maya Lodish, M.D., a Pediatric Endocrinologist at the Eunice Kennedy Shriver National Institute of Child Health and Human Development at NIH in Bethesda. Currently, Nesma’s GVHD is being monitored by Kirsten Williams, M.D., a Blood and Marrow Transplant Specialist at Children’s National Health System.

Camp Fantastic is distinctive in that it provides a normal camping experience for a unique group: children between the ages of 7 and 19 who are undergoing cancer treatment presently or in the last three years, or a bone marrow transplant in the last five years. The week-long camp, held in Front Royal, VA, provides approximately 100 campers the opportunity to participate in a range of traditional camp activities, including sports, swimming, crafts and adventures, alongside peers who have shared the cancer experience.

Nesma has now aged out of Camp Fantastic, but she fondly looks back on her experiences and hopes to return in the future as a camp counselor. Horseback riding and cooking classes were among some of her favorite activities; she most notably recalls a class in which campers learned how to groom and care for horses. Beyond the wide offering of activities, the camp atmosphere and people drew her back each year.

According to Nesma, “the one thing that sets Camp Fantastic apart from a lot of other camps is that you’re there with people who are like you or in the same situation as you’ve been in before. It’s really about connecting with the people at camp. Your counselor, your roommate, everyone.” Her best advice for new campers? “Get to know as many people as you possibly can. Make the most of it and get involved in as many activities as possible.”

Presently, Nesma is an intern at the Division of Budget and Financial Management at the NIH Bethesda campus. She became especially interested in working for NIH after learning about its employment opportunities for disabled individuals – an aspect of the job that makes her feel right at home on campus. Nesma considers the people she works with to be the best part of her job and aspires to have a career in clinical psychology. 

Camp Fantastic is run in cooperation with Special Love, Inc., and the National Cancer Institute (NCI). Special Love, Inc., is a non-profit organization providing unique experiences for children with cancer and their families. At NCI, the Pediatric Oncology Branch team within the Center for Cancer Research coordinates the camp according to a clinical protocol. For the last 23 years, Stephen Chanock, M.D., Director of NCI’s Division of Cancer Epidemiology and Genetics (DCEG) has served as the camp’s medical director by overseeing the camp’s medical team of clinicians and nurses. DCEG also provides volunteer medical and camp staff. The 2017 Camp Fantastic session runs August 13-19.

Summary Posted: 08/2017