Juana, a 13-year old Mayan girl living in the mountains of Guatemala, has a tumor the size of a tennis ball jutting out from her forehead. The smell of rotting flesh she emits is so strong, only her immediate family can stand to be in the same room with her. She and many other children in her remote village were born with xeroderma pigmentosum (XP), a rare genetic skin cancer.
Many are blind, and unable to be exposed to the smallest amount of UV rays without developing painful cancers. For generations, the village has endured this affliction, believing the disease is caused by evil spirits. Visits to local witch doctors, however, have provided no relief.
Instead, the doctors who do finally help are from the U.S., and their persistence and courage are the subject of a new documentary, Hidden From Light.
The Story of Hidden From Light
Juana's cancer is extremely advanced, but her will to survive is so strong, the doctors believe they can operate successfully. Their hope is that after surgery, she can have a somewhat normal life, free from the decaying flesh and painful tumors caused by her XP. She will need a special suit to protect her from UV rays and her home will be outfitted with UV filters on the windows. Her face will be forever deformed, but her torturous pain will be gone.
The story of Juana, her brother and several other children is portrayed unflinchingly in the film, which was screened at the San Diego Children’s Museum October 16. The screening was a fundraiser for the XP Family Support Group, and the evening was complete with silent and live auctions.
Written and directed by Brian Knappenberger, the film is an emotional and educational view of the humanitarian efforts of doctors whose work in a remote Guatemalan village might someday change the prognosis of skin cancer for everyone.
To perform these operations, the medical staff use a clinic in the nearest town, three hours away from the village by way of a rutted, treacherous road often prowled by bandits.
Once at the clinic, the windows are covered with UV barriers, and they face a primitive operating arena. They lack x-ray machines, clean running water, and many of the medical supplies and equipment commonly found in the U.S.
Crucial to their decisions on whether to operate is each child's hemoglobin count. They perform tests on a rudimentary device and discover that Isabelle, whose tumors are not as advanced as Juana’s, nevertheless cannot be operated on because she is so severely anemic as a result of the XP.
In the end, Juana and the other children come through the anesthesia and surgery with no problems. They are bandaged up and taken back to the village on the jarring dirt road.
The People Behind Hidden From Light
This high incidence of XP in the village was initially discovered by Peggy Tuttle, Director of Good Samaritan International. The rest of the team includes Bari Cunningham, MD, Gary Fudem, MD, Fred Mihm, MD, Michele Milota, Executive Director of the XP Family Support Group and mother of an XP-afflicted child, Amy Laden, Director of International Services Interplast, first year medical student David Larson, and Maria Pedersen, a surgical nurse at Sutter Health Care in Davis, CA.
Hidden From Light Suggests New Hope for Skin Cancer Research
An added benefit from this trek is that the doctors will return to the U.S. with large amounts of the highly toxic cancerous material removed from the children. These samples will be used in the pursuit of future life-saving breakthroughs for skin cancer patients worldwide.
The XP Family Support Group is in need of contributions for their continued efforts to help children born with this disease. Interested parties should contact them for more information.
The film was edited by Lorraine Salk and produced by Luminant Media.
More information about XP in Barillas can be found in the article Guatemalans Suffer From Fatal Skin Cancer.
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