Creating a camp to connect and support children with sun sensitivity
Camp Sun Escape will provide a sun-free sanctuary for our community
Because my son Brady grew up with erythropoietic protoporphyria (EPP), a rare condition that causes extreme sensitivity to sunlight, finding a safe space where he could just be a kid meant everything to me.
EPP means that even brief exposure to sunlight can cause severe pain, making typical childhood activities risky endeavors.
A saving grace came in the form of a special “night camp” designed for children like Brady. Year after year, Camp Sundown supported not only my son but also the rest of my family. Brady’s siblings joined as campers and later as counselors, and I connected with other parents, sharing our challenges and triumphs. It was more than a camp; it was a transformative experience that showed us we weren’t alone.
Given the profound impact that camp had on our lives, I felt a deep sense of loss when it closed permanently due to the pandemic. With no other camps offering that same sense of community and an “all for one without the sun” attitude, there was a void that needed to be filled for the next generation of kids who lacked such a sanctuary.
An idea began to take root: Why not create our own camp? Why not rebuild the community that had given us so much and offer it to other families?
A labor of love
Planning a camp, as it turns out, is an immense undertaking. I turned to Craig Leppert, a fellow EPP patient, advocate, and friend who launched Shadow Jumpers, an organization that helps to make wishes come true for kids with rare sun disorders. His enthusiasm, dedication, and shared experience made him the perfect partner for this ambitious endeavor alongside the United Porphyrias Association, where I serve as president. His dedication ensured that every camper would feel valued and included. Having lived through the same experiences gave him the ability to empathize with both the kids and their parents, which adds a depth to the camp that is truly special.
Craig may rue the day he said yes when I proposed that, “Hey, we should have a camp. Let’s plan it together!”
Along with many others, we embarked on a journey to bring Camp Sun Escape to life. Our motto is “All Fun, No Sun,” and we set out on a mission to make it happen.
(Courtesy of the United Porphyrias Association and Shadow Jumpers)
Location was key. We honed in on Victory Junction, a camp in North Carolina geared toward children with serious medical conditions. The staff wholeheartedly joined us in organizing activities that were safe and enjoyable for sun-sensitive children, ensuring medical support, and creating an environment where everyone felt welcome and included.
This venue was the perfect backdrop for Camp Sun Escape. It offered a medically safe environment where activities like horseback riding, archery, and fishing could be conducted indoors or during the late evening, ensuring our children’s safety and enjoyment. They even secured donations of materials, and a team of seamsters made window coverings so that our campers could be safe and carefree.
When leaders at Victory Junction said we could bring our own volunteers, it was game on! We’ve stacked our volunteer crew with fellow EPPers and caregivers who will donate their time and join in creating a nurturing community.
The generosity of Disc Medicine, a biotech company that sponsored the entire camp, is a testament to the community’s support for families dealing with sun sensitivity disorders. Its sponsorship helped alleviate the financial burden, allowing us to focus on creating an unforgettable experience for the families.
Our plans solidified, and we watched registrations roll in, eventually totaling 110 campers, siblings, caregivers, and volunteers — all of whom will come together next weekend, May 3 to 5. The response was overwhelming, reinforcing the necessity and impact of our mission. Every detail, from adaptive activities to nighttime scheduling, has been crafted to ensure that our children will experience the joy of camp just like any other child, without the looming threat of sunlight.
As the camp draws near, our community is excited. My hope is to create a new legacy. The thought of children who spend much of their lives in the shadows now having a place to shine and be themselves, if only for a short time, is profoundly moving.
The journey to establishing Camp Sun Escape shows what can be achieved when a community comes together, driven by a common goal and a shared experience. It has been a labor of love inspired by our children and fueled by our collective desire to see them thrive.
I hope that our campers, their families, and our volunteers walk away from Camp Sun Escape 2024 with the armor they need to tackle the summer months and that, when tough times come, they will smile at memories of the fun, laughs, and new friends they made.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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Ginger
Thank you to everyone who helped make this camp happen! As a volunteer I think I might be as excited as the kids! A very special thank you to Disc Medicine for supporting our community in such a meaningful way!