"Camp Sundown gets its name because the youngsters that attend cannot go outdoors during the daytime or even stand under fluorescent lights because ultraviolet radiation, any UV radiation, is their mortal enemy. It will give them severe burns, it will give them squamous cell skin cancer, it will cause malignant tumors to grow in their eyes and mouths, and make many of them blind as their condition reaches its late stages. The sun and blue skies we wish for in spring and summer will cruelly ravage their bodies.
The kids, these fragile, beautiful kids, who want nothing more than to be whatever we like to call ordinary in this world, are afflicted with a genetic condition called Xeroderma Pigmentosum that takes the lives of most people with the disorder before they reach the age of 20. It is rare, so rare there are only between 150 and 250 sufferers in this country, maybe two or three thousand around the world."
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posted by Pantengliopoli at 12:26 PM on August 14, 2009 [1 favorite]