Anna was born with Xeroderma Pigmentosum (or XP). XP is a rare inherited disease that causes her to be extremely sensitive to the damaging effects of ultraviolet radiation. This condition is an autosomal recessive genetic disorder of DNA repair in which the ability to repair damage caused by ultraviolet (UV) light is deficient. In extreme cases of XP, all exposure to sunlight must be forbidden, no matter how small; as such, individuals with the disease are often colloquially referred to as “Children of the Night.”
Anna’s variation is XP – Group D. Daily living is a bit different for Anna. Each day, Anna’s skin is covered with sunblock and lotions. She must remain indoors to be completely safe. Before going outdoors on occasion, Anna must wear shoes, long pants, long sleeved shirts, gloves, sunglasses, and as she gets older, a custom made hat with a specialty UV-blocking plastic face shield.
Each window of our home and car has been treated with a UV-blocking film, thanks to the generosity of 3M, Glamour Glaze, and the XP Family Support Group. UV blocking plastic sheets are used to cover her stroller and windows at places such as Church and other family members’ homes.
Because Anna was diagnosed early, if she continues to not show neurological symptoms, and takes all the precautionary measures to avoid exposure to UV light, she will defy the odds and live a long, happy life.