Every summer, families affected by FA from come together at Camp Sunshine in Casco, Maine for five days. The Family Meeting (or Family Camp) is a special event that allows families to hear from expert FA researchers and physicians, to attend support groups for help in coping with the disease, to voluntarily participate in FA research projects, and to connect with other families affected by FA. Meanwhile, Camp Sunshine provides a fun-filled program for children with FA and their siblings.
We asked FA families to share with us some of their favorite moments from 2018’s meeting. As memories were shared, we noticed some common themes that families seemed to appreciate most about camp. Here are ten of the best things about FA family camp:
“One of my favorite moments was swaying side to side with our arms around each other singing the Camp Sunshine theme song. It was very special to know that at that moment, everybody had each other’s backs no matter what. We understood each other more in a glance than some people do in a lifetime. It was a peaceful easy feeling!” – Jack, adult with FA
“The support groups are our favorite part of Camp. It’s such a special time, when we can share the best and worst moments of living with FA, with the only other people in the world who really get it.” – FA parent
“One of the best things about camp is knowing my 13-year-old, who does not have FA, actually wants to be there. She makes friendships and memories that carry her the whole year through. It makes my heart smile. Most days are spent dealing and worrying about our daughter with FA, so we love knowing that our children without FA are happy at camp. That is the best feeling in the world!”
– Dawn, FA parent
“My favorite moment is always the big reunion between our son Dylan and his closest friend, Eli.” – Lisa, FA parent
“We’re always grateful for the updates from FA researchers and doctors. The panel on bone marrow transplant is so informative, and we love learning about trials and therapies on the horizon. It’s great to see how our fundraising efforts are literally paying off.” – FA parent
“We love hanging out and swimming at the beach area as a family on Tuesday afternoon (the free day)!” – The Hessels Family
“The emotional power of the balloon release caught me unawares and certainly made me pause to reflect on what more I could do to help reduce the number of balloons in the future. A very poignant moment.” – Bob, FA parent
“I love the bonding between FA moms, working out the stress of having a kid with FA.” – FA parent
“Wanting to capture some memories before we left camp, we asked a couple of Bella’s friends to get in a picture with her. What started out as a group of 3 quickly grew to 4, then 5, then more, all gathered around Bella. As I looked at the picture later, I was reminded what an extraordinary tribe of support Bella has from the FA community. Friends both with and without FA surround her with love and support - physically when they are at camp like in this picture, but always in spirit throughout her FA journey. Here is Bella, FA Warrior, surrounded by her tribe - all fighting FA in one way or another.” – Stephanie, FA parent
“Our favorite moments are watching the joy on our son Eli’s face. Every day he makes a new friend. Those memories will forever stay will our family.” – Madison, FA parent
Thank you to everyone who makes the Family Meeting possible each year. If you’re interested in attending this year’s meeting, please get in touch with Family Services Director Marie Sweeten or click below. See you in June!