Hidden From Light

SYNPOSIS

Juana’s life started out pretty much like any kid born in the jungles of Western Guatemala.  Her mother made corn tortillas and warmed black beans on an open-fire oven.  Her father worked in the mountains picking coffee.  Kids played soccer on any flat surface they could find and spoke a language called Q’anjob’al, a Mayan dialect that dates back centuries. Her country had just come to the end of a brutal, 36 year war, much of it fought in the jungles around her village. So her family was experiencing peace for the first time they could remember.

But soon after she was born her mother noticed something unusual in Juana.  She was highly sensitive to light, her eyes tearing up with the slightest exposure. She would cry when carried outside, and she suffered from red, dry skin.  Soon small dots, freckles they called “puntas,” appeared on her face.

For the villagers, these symptoms were all too familiar.  They knew what would come next.  Juana would get worse, eventually going blind.  The “puntas” would grow, becoming deep black spots, then flaky skin, and eventually ulcerating through the skin to expose the flesh underneath.  Believing it was a curse, her family saved enough money to consult a witch doctor, but nothing they did seemed to help.  By the time Juana was 13 a tumor on her forehead had grown to the size of an orange.  She was in intense pain and could barely move.  The smell of rotting flesh was so powerful it was impossible for anyone but her closest relatives to stay in the same room with her.  They did what they could to make her life bearable, but were told by villagers, doctor’s from a nearby town, and other families that had gone through it with their own children, that it was only a matter of time before she died.

Juana was born with a genetic disease called Xeroderma Pigmentosum, or XP.  XP puts it’s victims in direct battle with one of the most common elements in all of our lives; the sun. People with XP cannot tolerate any ultraviolet radiation, so even a few minutes of sunlight can cause cell damage that inevitably turns to cancer.

It is an extremely rare disease, affecting one child in one million, but a few years ago a remote village in Guatemala was discovered that had not just one but 26 cases of XP, making it one of the most unusual disease clusters in the world.

“Hidden From Light” is the story of Juana, and the story of a medical team who traveled to her village with the hope that they could save her and the other kids in her community inflicted with the disease.  It is a story of turning a makeshift medical facility into a full scale operating room, and overcoming obstacles from language, to lack of running water and extreme isolation.

But what might be the most striking aspect of Juana’s story is what it could mean for the rest of us.  The prevalence of tumors in this group of kids is so unusual, and so rich in genetic information that scientists believe they may have just discovered a vital element to solving the problem of skin cancer itself - the most common cancer in the world.

That is to say, this is a story of a group of kids hidden deep in the jungle who may hold in their DNA answers that could change how we see skin cancer forever.

CAST & CREW

Executive Producers: Bari Cunningham and Michele Milota
Written and directed by: Brian Knappenberger
Produced by: Luminant Media
Editor: Lorraine Salk
Cinematography by: Brian Knappenberger
Soundtrack: James Dooley
Sound design: Jonny Oh

FEATURING

Bari Cunningham, MD, Dermatologist
Michele Milota, Executive Director of XP Family Support Group
Gary Fudem, MD, Plastic Surgeon U Mass Worcester
Amy Laden, Director of International Services Interplast
David Larson, First Year USC Medical Student
Fred Mihm, MD , Anesthesiologist Stanford University
Maria Pedersen, Surgical Nurse Sutter Health Care Davis California
Peggy Tuttle, Director of Good Samaritan International

SPECIAL THANKS TO:

The XP Family Support Group

Mary Pat Cederleaf

William Crain

Susan Crain

Gail Behrndt

Pam McCoy

Todd Feltner

Jennifer Feltner

Gareth Yuen

Connie Dyer

Kelley Piccione

Michele Milota

Todd Zinkann

Kim Beardslee

Ijaz Jamal

The Milota Family

William Evans

Elise Beckman

Desli Beckman

Laura Zieger

David Goshorn

Curtis McDonald

Ruby Santos

Claudia Buckley

Kathie Calvin

Jonelle Garro

Clay Kramer

Vaychan To

Malcolm Avner

Neal Mehra

Robert Rice – Great Commision Air  Department of Anesthesia, Stanford University
Mrs. Debbie Mihm
Sutter Davis Hospital and my family, Lars, Desiree and Niles Pedersen

The Cunningham Family - Bob, Nick, Eric, and Charlotte

The Women’s Dermatologic Society
Graceway Pharmaceuticals, LLC
Galderma
Ntropic
Neutrogena
Welch Allyn Inc
Interplast
Johnson & Johnson - Ethicon
UMass-Memorial Medical Center, Division of Plastic Surgery
Stanford University Department of Anesthesia
Kaiser Permanente
Michele Burns, MD
Douglass Ewald
Dana Townsend Cicerone
Sima Torabian, MD
Jonelle Garro
Stephanie and Mark Fogelson MD
Karen and Barry Reeve MD
Nedra Bickel
Yale Bickel MD
Kyle Bickel MD
Carrie and John  Dodge MD
Julie and Craig Leigh
Sara Dill MD
Bob and Pat Sodetz
Katherine Ozanich MD
Ken Gross MD
Kristi and Ron Nugent
Andrew Krakowski MD
Mark and Tonya Meyer MD
Ruth and Alan Larson MD
Ann Funk
Liz Darst
Cynthia and Jeff Stumbo
Joseph Lam MD
Phelps Lambert
Jordan Waldman MD
Sabriya and Mike Pedretti
David Larson
Cyril Thomas
Dennis OKeefe
Ed and Barbara Bickel
Vicky Barrio MD
Mark and Elizabeth Vierra MD
Christina and Danny Mendelsohn
Anne and Eric  Chodorow
Karen and JP McBryde MD
Cathy and Steve Kohler MD
Jennifer and Ed Arevalo MD
Amy Jo Nopper MD
John and Terri Ann Shearson Jessica Ysu MD
Dr. William and Krista Sullivan
Nicola Suttner-Borok
Nancy Webb Carpenter

Dr. Gonzalez and Staff - Centro Medico Bethesda Clinic
Huehuetenango, Guatemala, Central America

GSI Board of Directors and many donors and partners for providing food, medicine, and medical care for the XP families in Guatemala and supporting GSI’s XP Children’s Project .