Connective Issues - Winter 2020

For all the medical progress that we’ve seen over the last several decades, one secondary benefit is the ability to now focus on quality of life. Camp Victory is one program that was designed with exactly that focus in mind. The kids and families who attend spend a few days each summer soaking up quality life experiences in a safe and adapted environment. Liam Nelson was 17 when he first attended as a volunteer. Liam can’t get enough of camp in part because of what it adds to his life, and now – as a counselor – because of the opportunity it gives him to help add to the lives of the campers and their families. Summer camp often means lots of activities that kids with Marfan and related conditions would typically not be able to try, leaving them either on the sidelines or left out entirely. Camp Victory, however, brings those activities to kids of every ability and adapts them so everyone can participate. “My first year at camp, I climbed a rock wall and all the campers and staff applauded. I was immediately in tears. I’d never had the experience of tackling an obstacle like that before,” said Liam. “Here, we can overcome things that we wouldn’t even get to try anywhere else.” The elements of community and adventure are such big pieces of a summer camp experience, which are also missing for a child with Marfan or a related condition who cannot attend a regular summer camp. According to Liam, these are among the most important benefits that Camp Victory offers to kids with genetic aortic conditions. “You don’t have to push yourself physically to get the benefits of a summer camp,” said Liam. “Just being in an adventurous space together solidifies a special kind of community for campers.” These opportunities are so impactful for kids that Liam has taken it upon himself to help more kids and parents alike find their way to Camp Victory. As a young adult with Marfan and an experienced camper, Liam is the perfect go-between to lead the way for kids and soothe the nerves of parents. “Camp is a place where kids can become more independent in ways that kids with genetic aortic conditions especially need. It’s also a time when parents can start to let go of their child in a safe place with people who can help them have the best experience,” said Liam. Children with Marfan and related conditions did not have this opportunity prior to the Foundation launching Camp Victory. “It’s a privilege and the result of advanced medicine that we are all finally able to focus on quality of life. Now we can talk about and develop the whole person,” said Liam. He added, “At Camp, we get to be people. Everyone there – we’re just people, not just the bodies we inhabit, that happen to be affected by Marfan or a related condition.” And that opportunity to just be a person may be one of the greatest gifts of progress we’ve seen so far. PROGRESS IS QUALITY OF LIFE

CAMP DATES & REGISTRATION CAMP VICTORY FOR FAMILIES • April 17 – 19, 2020 Winder, GA – Camp Twin Lakes • May 1 – 3, 2020 Clarksville, OH – Camp Joy CAMP VICTORY FOR KIDS • July 26 – 31, 2020 Winder, GA – Camp Twin Lakes

Register at Marfan.org/camps

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Winter 2020