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” 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” has its national broadcast premiere on Thursday, Oct. 18 at 10 p.m. during the 25th season of the award-winning PBS documentary series POV (Point of View).
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.
Yolanda said she believes that “the kids were sent for a reason … to teach us something, and that’s for us to figure out.”
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.
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,” said 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.”
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