Connective Issues Spring 2019

VICTORY AT CAMP

Becky Gunn and her family have attended every Camp Victory for Families since the first in 2017. Her daughter, Hadley, was nine when they first went to camp and her sister, Avery, was seven. Becky said “The great thing about family camp is that our whole family could go and have fun together.” The girls had never attended camps before, but as soon as they’d experienced Camp Victory, both were counting down the days to do it again. At their first family camp, Hadley met two other nine-year-old girls with Marfan and the three have been connected ever since. They were going through the same things and formed a friendship that grows each time the girls reconnect at camp and Annual Conference. “We knew right away that they would grow through the years together because they understand each other the way no one else can,” said Becky. Meanwhile, Becky herself fell in love with family camp. With lots of time and flexibility in the schedule, parents can participate in activities with the kids or gather together and have great conversations themselves. “You get advice, share stories, and share experiences with someone who’s been through what your family has, or is about to go through something you have,” she said. After Camp Victory for Families, Avery went to her own sleep-away camp the next year and Hadley headed to Camp Victory for Kids. This is a big step for any family but can stir even more apprehension when a child needs a little extra support. “Of course I was nervous,” said Becky. “Was she going to get her meds? Would she do something dangerous? Would she be able to get her brace on?” “Overall, I know there is a nurse at camp. Hadley was with her friends, and family camp had inspired her confidence to be independent. At some point, typical kid or not, every parent has to let go and trust. You know they will be ok. It will be fine,” she said. Prior to 2017, neither of the Gunn girls had expressed any interest in camps. Hadley especially did not want to go. Mostly, she didn’t want to go to camp and be sidelined. But when it was a Marfan camp, she was all about it. “She hates being singled out. She wants to think of herself as a typical kid at camp. She’s a typical kid at Camp Victory,” said Becky. From the personal friendships, confidence, and independence Becky has seen in her daughter, to the connections she’s made with parents like herself, “There’s nothing like seeing your child as happy as they are at camp.”

Photo courtesy of Marfan community

Becky is a huge advocate for Camp Victory. To parents who are consid- ering it, she says, “Start with family camp so you can see it all for your- self. There’s really nothing like seeing your child as happy as they are at camp.” Camp Victory is adding strength to our community, with more camp op- portunities being planned in the coming year on the west coast, in the midwest, and in the northeast. p Hadley Gunn , right, and Lilly Shaw , of Centre, AL, became friends at the first Camp Victory for Families in 2017, where they enjoyed classic summer camp traditions like swimming and s’mores. “We knew right away that they would grow through the years together because they understand each other the way no one else can,” said Hadley’s mother, Becky.

You can still register for 2019 Camp Victory for Kids, June 30-July 5, near Atlanta, GA. To register or learn more, visit Marfan.org/camps .

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