Gleice Francisca Machado, a village teacher whose 11-year-old son, Alison, has XP, has studied its history in the area and says she found cases of people having the disease going back 100 years. She has started an association that educates locals about XP and tries to get parents to take extra care for their children, even if they may not have outward signs of the illness themselves.
"The sun is our biggest enemy and those affected must change day for night in order live longer," Machado said. "Unfortunately, that is not possible."
