Maya Stark and Adi Lavy
Maya Stark and Adi Lavy
When Leanndra was born, Dorey and Yolanda Nez took their newborn daughter for a picnic in the mountains near the family's home on the Navajo Reservation in New Mexico. On the outing, Leanndra received such a bad sunburn that her face swelled up, and her eyes temporarily sealed off. Leanndra was born with XP.
Xeroderma pigmentosum--XP for short--is a rare genetic disorder that causes an afflicted person to rapidly develop skin cancer and other ailments from any exposure to sunlight. The body of an XP-afflicted individual is unable to recover from damage caused by ultraviolet radiation. A quarter of individuals born with XP also suffer from neurological degeneration, resulting in progressively deteriorating hearing, muscle reflexes and cognitive functioning. Both Leanndra and her younger brother Darnell were born with the neurological degenerative form of XP.
In Sun Kissed, the new documentary by Israeli filmmakers Maya Stark and Adi Lavy, Dorey and Yolanda search for the cause of their children's fatal condition. In the process, the couple discovers more children living on the Navajo Reservation suffering from XP. As Dorey and Yolanda realize the prevalence of XP on the Reservation, they discover that a seldom talked about event in Navajo history may have much to do with the high rate of XP there.
Lavy, a documentary photographer, first met Dorey and Yolanda at an upstate New York summer camp for children with XP. When they met, Lavy was working on a photo-documentation project about the camp.
"We really hit it off right away," Lavy said. "I was really intrigued with them from the beginning."
While spending time together at the summer camp, Dorey and Yolanda told Lavy that they believed the cause for the high numbers of XP on the Navajo Reservation may have to do with the Long Walk--the U.S. Government's forced relocation and Christianization of the Navajo from their homelands in northeastern Arizona and northwestern New Mexico to the Bosque Redondo internment camp located in southeastern New Mexico during the mid-1800s.
"It's that revelation that makes them [Dorey and Yolanda] redefine who they are," Stark said.
The Long Walk is a taboo subject in Navajo culture. It's seldom mentioned due to the devastation it caused the Navajo people and their culture--nearly one-third of the relocated Navajos died during the forced march and terrible living conditions at the internment camp. The loss of life during this time led to a decrease in genetic diversity within the Navajo people. This resulted in an abundance of Navajos carrying XP's recessive gene. If both parents of a child each carry the recessive gene for XP, there is a 25% chance the child will be born with XP.
This decrease in genetic diversity within the Navajo people has resulted in the high rate of XP found on the Navajo Reservation. In the general U.S. population, XP afflicts one out of every 1-million people. On the Navajo Reservation, that number is one out of every 30,000 people.
After Lavy returned to her home in New York City, she told Stark about her meeting with Dorey and Yolanda. The two women realized the Long Walk connection to XP on the Navajo Reservation was a story of great magnitude.
"That's a really interesting story which has the potential of illuminating the long-lasting effect of colonialism on the Navajo Tribe," Stark said.
As Israelis, Stark and Lavy are powerfully aware of the long history of oppression of their own Jewish ancestors that included the Holocaust. Unlike many Navajos who have chosen to forget their own holocaust--the Long Walk--Israelis are committed to remembering what happened.
"The Holocaust is something that is so important in Israel," Stark said. "As kids we're encouraged to have a very specific relationship with that history with sentences like 'remember and never forget.'"
Unlike many Navajos, Dorey and Yolanda took initiative, as adults, to recognize and understand Navajo history. Lavy and Stark said that Dorey and Yolanda were intrigued by Jewish history and how Jews have dealt with the trauma of the Holocaust, colonization and cultural assimilation. Although Jews and the Navajo come from different backgrounds and different parts of the world, their histories are similar to one another in many ways.
"It did make us closer," Lavy said, talking about the similarities between Jewish and Navajo histories.
The fact that Stark and Lavy were not Americans also played a positive role in their interactions on the Navajo Reservation.
"It made it easier for Yolanda, Dorey, their family and the community around them to accept us because we are Israeli," Stark said. "It was much easier to talk about certain things more freely because they knew we were not Americans."
Sun Kissed is the feature length directorial debut for both Stark and Lavy. Prior to Sun Kissed, Stark directed numerous short films and edited films and television projects for media outlets including the Sundance Channel and the BBC. She edited the award-winning 2007 PBS Independent Lens feature documentary, Wings of Defeat, a film about Japanese kamikaze pilots who survived.
As a photographer, Lavy has worked with an array of international publications including Newsweek and Italy's Le Repubblica. Her photo project entitled Camp Sundown, about the summer camp for children with XP, was a finalist at the Hyeres International Festival of Fashion and Photography.
"The stories that interest us are very personal stories that have a much larger context," Stark said. "That is something you can see in Sun Kissed."
Interviews were conducted and edited by Ben Kreimer.