When a Navajo couple discovers their children have XP, a disorder that makes exposure to sunlight fatal, they also learn their reservation is a hotbed for this rare genetic disease. Why? Sun Kissed, a new film from POV, follows Dorey and Yolanda Nez as they confront cultural taboos, tribal history and their own unconventional choices to learn the shocking truth: The consequences of the Navajos’ Long Walk—their forced relocation by the U.S. military in 1864—are far from over.
Maya Stark and Adi Lavy's Sun Kissed airs on KUED Tuesday, October 23 at 11:00 p.m. The film will stream in its entirety on the POV website, www.pbs.org/pov/, from Oct. 19 to Nov. 17 in recognition of American Indian Heritage Month in November.
After losing their son to XP (Xeroderma Pigmentosum), Dorey and Yolanda Nez faced the devastating reality that their daughter, Leanndra, was also afflicted. Yolanda, as an advocate for Native Americans with disabilities, encountered other Navajos who knew of children with the same disease. Following these leads, the couple made the astonishing discovery that while XP shows up at a rate of one in one million in the general U.S. population, on the Navajo reservation, which crosses three states, including New Mexico, where the Nez family lives, the rate is one in 30,000.
What could account for such a tragic discrepancy? Sun Kissed is the candid and moving story of the parents’ struggle to understand their children’s fate, an unexpected journey that forces them to confront tribal lore and their feelings of guilt, and ultimately leads them to the shocking truth. Navajo children are still paying the price for the American conquest of their tribe in the 1860s, a brutal campaign culminating in an almost-forgotten episode in American history—the Navajo Long Walk of 1864.
Sun Kissed is the story of the love and fortitude Dorey and Yolanda bring to caring for Leanndra and to confronting the extraordinary fate of having two children with XP. Yolanda says she believes that “the kids were sent for a reason . . . to teach us something, and that’s for us to figure out.” The film provides a rare look inside Navajo society, a world divided between traditional ways and the ways of modern American life.
Dorey and Yolanda's search leads them to Jon Aase, a geneticist at the University of New Mexico who is the first to suggest that the prevalence of XP may have been caused by the Navajo Long Walk. The late historian of the Southwest Harry Myers and geneticist Robert Erickson explain what happened in the 1860s and the bearing that it still has on the tribe’s entire way of life.
The Long Walk was the climax of a brutal war against the Navajo people, beginning in 1862 when Americans invaded the Southwest. The Navajo were forced to walk 500 miles; those who could not keep up were shot or imprisoned. In Erickson’s estimation, the war reduced the tribe to about 2,000 adults of reproductive age, and all 250,000 Navajos living today are descended from that limited pool of ancestors. The result was a “genetic bottleneck” that allowed recessive genes like those that cause XP to present in all living members of the tribe, which led to the disease occurring more often. The Long Walk also marked the beginning of the modern-day Navajo Nation and its assimilation into American culture.
This knowledge helps the parents of XP children begin to uncover an important part of Navajo and American history, and also serves as the lesson Yolanda believed her children were sent to teach their family. “We met the Nez family in 2007 at a summer camp in upstate New York for children with XP,” say filmmakers Stark and Lavy. “Dorey and Yolanda had traveled more than 2,000 miles with their daughter, Leanndra, to learn about different treatment options. From our very first conversation, Dorey and Yolanda opened their hearts and lives to us.
“When they mentioned that they were exploring a possible link between XP and a hidden event in Navajo history, we understood that their story was part of a larger historical narrative. Over four years of filming, Dorey and Yolanda opened a door for us into the Navajo community, which is otherwise suspicious of outsiders. As the story unfolded and led us to unexpected places, we were constantly inspired by their honesty and strength—as well as their ability to remain positive in the face of adversity.”
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