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.
Dorey and Yolanda watching the sunset. Credit: Maya Stark
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.