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A Rare Genetic Disorder Is Stalking the Children of the Navajo Nation In POV's 'Sun Kissed,' Premiering Thursday, Oct. 18, 2012, on PBS
A Rare Genetic Disorder Is Stalking the Children of the Navajo Nation In POV's 'Sun Kissed,' Premiering Thursday, Oct. 18, 2012, on PBS
One Couple's Heartrending Struggle to Understand the Cause Leads Them To a Nearly Forgotten Episode in the American "Winning of the West"
A Co-production of ITVS; A Co-presentation with Native American Public Telecommunications, Inc.
After losing their son to XP, a rare and fatal genetic disease that causes skin cancer from any exposure to sunlight, Dorey and Yolanda Nez faced the devastating reality that their daughter, Leanndra, was also afflicted with XP. Dorey shouldered the enormous burden of caring for his daughter, while Yolanda, in her work 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? Maya Stark and Adi Lavy's Sun Kissed is the candid and moving story of Dorey and Yolanda's struggle to understand their children's fate, an unexpected journey that forces them to confront their feelings of guilt and the tribal lore that reinforces it, and ultimately leads them to the shocking truth. Their children and other 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 has its national broadcast premiere on Thursday, Oct. 18, 2012, at 10 p.m. during the 25th anniversary season of the award-winning PBS series POV (Point of View). POV continues on Thursdays at 10 p.m. until Oct. 25. Fall and winter special presentations conclude the season. (Check local listings.) American television's longest-running independent documentary series, POV is the winner of a Special Emmy Award for Excellence in Television Documentary Filmmaking, two International Documentary Association Awards for Best Continuing Series and the National Association of Latino Independent Producers Award for Corporate Commitment to Diversity.
Sun Kissed frames its story in the rhythms of reservation life and the stark beauty of the land surrounding the relative poverty of the homes. The brightness of the New Mexico sun stands in heartbreaking counterpoint to the most striking effect of XP (Xeroderma Pigmentosum) — making any exposure to sunlight potentially fatal to children. At its most intimate, 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."
Sun Kissed also provides a rare look inside Navajo society, a world divided between traditional ways and the ways of modern American life, a world with strong taboos against speaking of bad things since "you are just setting yourself for jinxing," as Dorey says. He and Yolanda find themselves at the crux of these contradictions as they search for answers.
They are told by tribal medicine men that harm that Dorey caused to nature, especially his childhood habit of burning red ants, played a part in his children's fate. In addition, traditional Navajo taboos against clan intermarriage are strong and complicated. There are 75 Navajo clans and each Navajo is born into four of them, determined by his or her parents' ancestral lineage. Children are repeatedly exhorted by their elders to know their clans and to avoid marrying within them. Dorey and Yolanda knew they had a clan relation when they married, but each clan counts thousands of members and relations are not necessarily very close. As self-defined "modern Navajos," the couple disregarded their elders' warnings. Tribal wisdom now tells them that their breaking of the taboo contributed to their children's genetic disorder. When Dorey and Yolanda discover that other Navajo parents of XP children have married outside of their clans, they realize there must be another explanation for the disorder.
Dorey and Yolanda's search eventually leads them to Jon Aase, a geneticist at the University of New Mexico. Aase is the first to suggest that the prevalence of XP may have been caused by the Navajo Long Walk of 1864 — a catastrophic event in Navajo history that had been nearly erased from the memories of younger tribal members. Dorey's efforts in Sun Kissed to elicit stories of the Long Walk from his grandmother and other elders, whose stoic silence honors the Navajo way, prove futile. Ultimately, it takes the late historian of the Southwest Harry Myers and geneticist Robert Erickson to explain what happened in the 1860s and the bearing that it still has on the tribe's entire way of life, including Navajo culture and identity.
The Long Walk was the climax of a brutal war of near-extermination waged against the Navajo people, beginning in 1862 when Americans invaded the Southwest. A Navajo population of some 25,000 was swiftly reduced to 5,000 to 8,000 people. The Navajo were forced to walk 500 miles — those who could not keep up were shot — and subsequently imprisoned in a concentration camp for four years. The surviving Navajo were a devastated population. In Erickson's estimation, the war reduced the tribe to no more than 2,000 adults of reproductive age, and all 250,000 Navajos living today are descended from that limited pool of ancestors. The result, Erickson says, was a "genetic bottleneck" that allowed recessive genes like those that cause XP (relatively rare among the general population) to present in all living members of the tribe, which in turn led to the disease manifesting itself more often.
The Long Walk also marked the beginning of the modern-day Navajo Nation and its assimilation into American culture. As historian Myers tells Dorey and Yolanda, the ulterior motives of the U.S. military were to convert the Navajo people to Christianity and assimilate them into mainstream American society.
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. Sun Kissed is a riveting, surprising and cautionary tale about human endurance and compassion, and the long shadow that history casts over every aspect of contemporary life, not least of all in the American West. It is a story that starts with a single gene and quickly unspools to explore the larger narrative of a nation impacted — culturally, religiously and physically — by historical events.
"We met the Nez family in 2007 at a summer camp in upstate New York for children with XP," say filmmakers Maya Stark and Adi Lavy. "Dorey and Yolanda had traveled more than 2,000 miles with their daughter, Leanndra, to learn about different treatment options for XP. From our very first conversation, Dorey and Yolanda opened their hearts and lives to us."
The filmmakers continue: "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 with the potential to expose the long-lasting effects of American colonialism. 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."
Sun Kissed is a production of Sun Kissed Productions LLC.
About the Filmmakers:
Maya Stark (Co-director, Co-producer)
Maya Stark has directed and edited both fiction and nonfiction films. Born and raised in Israel, she moved to New York to pursue a career in filmmaking. A graduate of the School of Visual Arts, Stark has directed numerous short films, including Sweet Lonely and Before Chaos. She has edited several feature narrative and documentary films and television projects for BBC, Sundance Channel, AZN Television, here! and Logo. Recently, Stark edited the award-winning documentary Wings of Defeat. In 2007, the film had a successful theatrical run in Japan and was broadcast by ARTE in Europe. Sun Kissed is Stark's first feature documentary.
Adi Lavy (Co-director, Co-producer)
Adi Lavy is an internationally recognized documentary photographer who has worked with publications such as Newsweek, SZ Wissen (Germany) and La Repubblica (Italy). In April 2008, she was a finalist at the prestigious Hyères International Fashion and Photography Festival, where she showcased her project Camp Sundown, which addresses the inner world of children who suffer from XP, the genetic disorder featured in Sun Kissed. An Israeli native, Lavy began her career as a journalist working for various publications in Israel before turning to photography and attending Columbia University School of the Arts and the School of Visual Arts. She currently resides in New York City. Sun Kissed is Lavy's first feature documentary.
Co-directors/Co-producers: Maya Stark, Adi Lavy
Producer: Jocelyn Glatzer, Maya Stark, Adi Lavy
Cinematographers: Avi Kastoriano, Vincent Venturella, Maya Stark
Editor: Ron Goldman
Original Music: Karni Postel, Tom Darom
Running Time: 56:46
POV Series Credits:
Executive Producer: Simon Kilmurry
Co-Executive Producer: Cynthia López
VP, Production & Programming: Chris White
Series Producer: Yance Ford
Coordinating Producer: Andrew Catauro
- Los Angeles Film Festival, 2012
- AFI-Discovery Channel Silverdocs, 2012
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