By Staci Matlock
Afflicted with a rare and fatal genetic condition called XP, or Xeroderma Pigmentosum, the children’s bodies couldn’t repair skin damage caused by the sun’s ultraviolet rays. Instead, sunlight made their bodies rebel. Their skin freckled, then came skin cancer and a slow neurological decline.
XP occurs in about one of every 250,000 children worldwide and as few as one in a million in the United States, according to several studies. But among a scattered group of communities in the Navajo Nation around Coyote Canyon, N.M., the incidence could be as high as one in 30,000, according to a new documentary, Sun Kissed, by filmmakers Maya Stark and Adi Lavy, which is showing Wednesday, Oct. 17, during the Santa Fe Independent Film Festival.
The next-highest XP incidence known to researchers is one in 40,000, seen among Japanese children.
Stark and Lavy, the film’s co-producers and directors, spent four years following the devastating impacts of XP on Dorey and Yolanda Nez, who had two children affected by the disease. Their film documents the couple’s struggle to understand why their son and daughter both were afflicted. Their heartrending journey means the couple must navigate some of their own tribe’s taboos and beliefs about disease, history and marriage. They talked to medicine men, elders, family and scientists. Along the way, they discovered many more children in the area where they lived also had XP.
Eventually, the Nezes’ search led the couple and the filmmakers to Fort Sumner, N.M., and a historian who told them about the Long Walk, a seminal event in Navajo culture, which elders are reluctant to talk about. The Long Walk was the forced march of 8,000 to 10,000 Navajos in 1864 by the U.S. military to Fort Sumner. Half died during the forced march or from disease and cold after arriving at the encampment. The Long Walk could have created a “genetic bottleneck” for XP, one geneticist tells the couple.