When Dan and Caren Mahar’s daughter Katie was diagnosed with Xeroderma Pigmentosa (XP), a disorder where the skin is extremely sensitive to UV light produced by the sun, they decided the condition would not prevent Katie from living her childhood to the fullest. In 1995, the Mahars founded the XP Society to support other afflicted patients and families through research, information, and advocacy. Shortly thereafter, the idea of a “night camp” formulated during an XP family retreat in Poughkeepsie, NY. After seven years of advocacy and generous donations, Camp Sundown Retreat House opened its doors in 2013.
For children like Katie, even short exposure to the sun or other types of ultraviolet light can cause dry, flaking skin and third-degree burns that can develop into skin cancer. Participating in a traditional summer camp would have been extremely difficult, uncomfortable, and potentially life threatening. At Camp Sundown, all typical camp activities take place at night when it is safe for XP patients to be outside. For families and children dealing with XP on a daily basis, this is a dream come true.
Camp Sundown holds gatherings for a week each year in Craryville, NY and serves as both a camp for XP families and a medical conference for leading researchers on the subject. The camp is fully staffed and volunteers are trained and committed, with medical consult just a phone call away. What’s great about Camp Sundown is that there’s no admission fee for the camper and one parent or guardian. Additional family members up to a total of five per room are welcome for a modest $50 per person to cover added costs of food, lodging, activities, and field trip transportation.
You can get a glimpse of what life is like at Camp Sundown for those who suffer from XP by watching Sundown, a touching and beautiful short film by Liz Mandelup, below.
Camp Sundown: Website | Donate | Facebook
Lisa Mandelup: Website | Sundown
via [Laughing Squid]
All images via Camp Sundown, XP Society, and Sundown.