The setting was the beautiful great outdoors of southern Maryland at a waterfront summer camp with all the familiar trappings; games, hikes and campfires. But the 40-plus campers, ages 15 to 23, who came from as far as Alaska and Canada for a week this August share a bond as unique as it is poignant. These young people all know what it’s like to be affected by a disease that is devastating for their families to experience, challenging for doctors to treat, and for which, as yet, there is no cure.
“Camp is like an escape for most of us, but, for me, it’s really been more of a pause from everything,” said 17-year-old Lizzy, a local high-school student. “I’m having an amazing time! Here, we are connecting with people who know what you’re going through and relating on a level that I’ve never been able to relate to before. Our differences – our race, our looks, our interests – don’t matter here. You can just be yourself because we trust each other. It’s like our own little family of support.”
The Huntington’s Disease Youth Organization (HDYO), supported by MedStar Georgetown University Hospital, The Huntington’s Disease Society of America (HDSA) and Huntington’s Society of Canada (HSC), offered the camp, the first of its scale and size to be offered in North America. The camp’s main goal is to have fun and to learn to live positively in the face of difficult situations.
Lizzy is one example of the many other resilient campers at North American HD Youth Camp. She has seen her sister and mother live with Huntington’s disease (HD), a degenerative neurological disease with difficult symptoms that can affect someone physically, emotionally and mentally. These symptoms force many young people to mature faster than some of their peers, assuming more responsibilities in care giving, finances, and, in some cases, changing plans for education.
“Camp is a great opportunity to give kids a chance to be kids again,” said Chandler Swope, LICSW and director of Youth Services at HDYO. “This is an opportunity for kids to meet other kids in this similar situation and not have to be an educator. They can make new friends, walk away with some practical tools, but mostly, have fun.”
The camp staff also provided access to experts and resources that help young people learn how to live their life in a more optimistic way. They want to encourage young people to continue to dream and see their goals as achievable, despite the many HD-related obstacles they could encounter in their family life. The camp’s daily agenda involved sessions on care giving, communications and relationships, grief and loss, genetic testing, research, bereavement and more. They could round out their days with swimming, a ropes course, archery, canoeing, team building and paddle boating.
“Archery was like a dream come true! I’ve always wanted to be like Katniss,” said Lizzy, a few minutes after her ringtone sounded the Hunger Games theme music. She smiled and posed like she was holding a bow and arrow.
Each activity and learning session seemed to trigger another story, a deeper conversation and the eventual exchanging of phone numbers and social media contact information. By the second day, Lizzy already had new friends to follow on InstaGram and Snapchat. The staff, anticipating the campers’ engagement on social media, created a Facebook page to be a “safe space” for keeping in touch and reaching out for help.
“There is a great need for a camp like this! The heavy demands of HD symptoms can burden family members, so it is important to have an intentionally structured program that can provide social support and coping skills for young people impacted by HD,” said Karen Anderson, MD, director of the Huntington Disease Care, Education and Research Center (HDCERC), a joint endeavor of Georgetown University Medical Center and MedStar Georgetown University Hospital. “HD can cause behavioral changes including drastic mood swings, which could mean that, on one morning, an affected parent could appear ‘normal’ and, on a different day, the parent could be frustrated or angry. It is difficult for family members to gauge when the changes will occur in a loved one.”
One of the most memorable sessions for campers occurred around a campfire. Campers wrote their biggest fears on a piece of paper. When it was their turn, they shared their fear with the group and tossed the paper into the fire. It was an emotional evening for some, but it was also a big step forward to living positively, according to the camp staff.
The night after the bonfire, Lizzy was the first to wake up in her cabin. She said she wanted to go somewhere to think, so she walked down to the camp shore of the Wicomico River.
“It felt so peaceful listening to the waves of the river crashing against the rocks and to be able to see the sunrise,” said Lizzy. “I’m not sure why, but this morning is one of my highlights. I don’t get to do this in the city a lot.”
The camp experience encouraged attendees to remember to take time to “pause” from any situation at home. Swope said the self-awareness focus at camp helped campers determine what each individual needs to stay positive. By focusing the idea of support at an individual level, campers learned how they cope and how to best ask for help. Swope hopes the campers leave feeling more supported and with a better understanding of what it means to live with HD in their family.
“These events make a huge difference in the lives of these young people. You see it instantly,” said Swope. “We all have a lasting bond because of a common connection.”