Sun Kissed Documentary Ties Rare Genetic Disorder to the Long Walk
Imagine how much different your life might be if the sun, which is so important to life on our planet, were your sworn enemy. That's the case for those who suffer from the rare genetic disorder Xeroderma pigmentosum, or XP. It's rare, yet it affects some ethnic populations more than others, and it is far more common on the Navajo Nation than in the general U.S. population. When two Israeli filmmakers, Maya Stark and Adi Lavy, learned of a Navajo family with two children suffering from XP, they began to investigate -- and soon found themselves wondering whether the prevalence of XP might be related to a traumatic episode in Navajo history.
Neither of Dorey and Yolanda Nez' XP-afflicted children are with us any longer; what we're left with is Stark and Lavy's documentary, Sun Kissed. The film had its world premiere at the Los Angeles Film Festival over the weekend, and tomorrow night, June 20, it will have its East Coast premiere at the AFI-Discovery Channel Silverdocs Documentary Festival in Silver Spring, Maryland. The directors took time out of their busy schedule to share the story behind the film with ICTMN.
How did you learn of this family?
In 2007 we met the Nez family at a summer camp in upstate New York for children with the rare genetic disorder XP. Dorey and Yolanda had traveled over 2,000 miles with their daughter Leanndra from their home on the Navajo reservation in New Mexico in order to learn about different treatment options for XP, which can lead to cancer and death from any exposure to sunlight.
From our very first conversation, Dorey and Yolanda opened their hearts and lives to us, revealing the unique challenges of dealing with the disease as a Navajo family. They told us about the tug-of-war struggle between traditional Navajo healing ways and Western medicine and their isolation within their community as they questioned all that was sacred to them in order to provide the best care for their children. They also told us about the challenges of living with this isolating disease that required them to protect their children from the unforgiving New Mexico sun.
We were fascinated by their personal story, but when they mentioned that they were also 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. That’s why we decided to join Dorey and Yolanda’s journey to uncover the connection between XP and their past.
When we wrote Dorey and Yolanda suggesting that we would bring a camera and make a documentary about them, Yolanda wrote back to us saying: “We will be happy to have you here and shoot a small film about our daughter.” Little did they know that they were going to embark on a four-year journey that would ultimately change their perception of who they are and redefine their identities as modern day Navajos.
What happens to a person with XP?
XP causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation and sunlight. Undiagnosed and untreated, XP can lead to the early onset of skin cancer and blindness. There are seven variants of XP. Children born with the most severe variant of XP also suffer from fatal neurological degeneration.
Although this disorder is very rare, with the incidence rate of one in a million in the general population, on the Navajo reservation the incidence is alarmingly higher as it is 1 in 30,000.
As modern Navajos, Dorey and Yolanda are in a tug of war between Navajo traditional healing ways and Western medicine, neither of which is able to save their children. Adding to their troubles, they are unable to talk with their families or community about their situation due to traditional taboos about discussing illness and disease.
Due to the rarity of the disorder, the isolation of the Navajo families, and their traditional taboos, there are still undocumented cases of XP on the reservation. Tragically, families are often persecuted by social services for burning their kids, as a lack of information results in doctors who are slow to diagnose the disorder.
While shooting the film, it became clear that Dorey and Yolanda’s main hope for the project was that it would raise awareness about XP on the reservation.
How long did it take you to make this film?
From the day of its conception it took us five years to finish the film. We followed Yolanda and Dorey for for years, exploring every possible storyline related to the larger historical narrative and ended up with 350 hours of footage. With so many different storylines and ways in which we could cut the film, the editing process took longer than we had initially planned, as we strove to balance the Nez family’s intimate, personal story with the larger context of American colonialism.
What were the challenges you faced when trying to get this story told?
The biggest challenge was creating trust with the Navajo community. Dorey and Yolanda, the parents we were following, took us in and made us feel like family almost immediately. But the Navajo community at large was more suspicious of us as outsiders. So the biggest challenge was to gain their trust and make sure they knew we were there because Dorey and Yolanda wanted us to tell their story and that we were going to do so with the utmost respect for them and their tradition.
As we started filming, we encountered a world divided between traditional ways and the ways of modern American society, a world with strong taboos against speaking of bad things lest the “talking harm you.” We accompanied Dorey and Yolanda as they challenged their community to break down long-held taboos, searched for answers about why this rare disease had come into their lives, and found themselves at the crux of their cultural contradictions.
It was fascinating for us, as Israeli descendants, to learn of the taboos surrounding the most traumatic event in Navajo history. Having grown up in a society that sanctifies the remembrance of the Holocaust, we were always encouraged to have a specific relationship with our history and its ramifications. It was fascinating for us to accompany Dorey and Yolanda as they first learned about their history and later developed their own relationship to it, ultimately leading them to a rediscovery of who they are.
After two years of filming the movie, when Dorey and Yolanda had finally met other XP families on the Reservation and discovered there might be a connection to the Long Walk, we found ourselves confronted by forces that didn’t want us to make this film.
The taboo surrounding any discussion of the Long Walk was so great that we were stonewalled by members of the community and almost gave up on the project.
As outsiders to the Navajo community we wanted to be respectful of their culture. We realized that it wasn’t our place to move forward with the story and decided to pack up and go home, until Dorey and Yolanda asked us not to give up on their story.
They realized how deeply they had internalized the Western narrative about the Long Walk, and wanted to finally understand what had happened there from their point of view.
It was then that we realized how important this story is, and we found the strength and justification to push forward with Dorey and Yolanda as they went up against the silence and taboos.
The very process of making the movie showed what they were up against in their quest for answers. As we continued shooting, several members of the Navajo community came forward and championed the cause, believing that these controversial issues should be talked about and dealt with. That’s what is beginning to happen on the Reservation today.
The trailer indicates that something in the history of the Navajo people might have made them more susceptible to the disease. Can you elaborate on that just a little?
Geneticists believe that the reduction of the Navajo population along with their genetic isolation gave rise to an increase in recessive genetic disorders, including XP. They attribute the reduction of the Navajo people to the most traumatic event in Navajo history – the “Long Walk” – the US Military’s forced relocation of the Navajo people from their sacred lands in 1864.
Have the people in the film seen it? What did they think?
We invited Dorey and Yolanda to New York and showed them the film. They laughed and cried as their watched their own journey on the screen.
Their immediate reaction after the screening was relief. The film touches on very sensitive and controversial issues on the reservation and they were happy to see that we portrayed their journey in the most respectful way possible, giving room to the complexities living in a cross cultural world, without a critical eye, while allowing audiences to start a discussion and come to their own conclusions.
For them it was also really great to see footage of their daughter Leanndra, who passed away during the filming. They were really happy to have this movie to remember her by. Also they believed the movie was really going to help them raise awareness about XP on the reservation and help Navajo families with undiagnosed, or misdiagnosed XP children come forward and create a community of informed XP families.