What if you found out that you would have all five of your senses slowly stolen away from you within the first thirty years of your life?
This film documents the lives of several patients living across the world with the rare and terminal genetic disorder Wolfram syndrome. With no current cure, each of the patients have an average lifespan of 30 years to pursue their passions and interests. Ellie White, an eleven year old girl living in Colorado with big dreams of becoming a dancer, mother, and spokesperson on behalf of rare genetic disorders, lives life to the fullest through her artistic talents and positive attitude towards life. Adam Zwan, a twenty-five year old patient in North Carolina, pursues his obsession with physical fitness and nutrition, which has allowed him to considerably slow the effects of the disorder and harness the power of self control. Each one of these individuals has their inspiring story to tell, which can remind us that even in the darkest of places, we can find a light in the shadows.
Proceeds from the film will be donated to Wolfram syndrome research, a disorder so rare that few have heard of it, and only a handful of people are helping to find a cure.
About the Film
"A Light in the Shadows" aims to offer an artful perspective into the daily lifestyles of people living with a rare genetic disorder and the ways that they have chosen to celebrate their lives. The film also uses Wolfram syndrome as a vehicle to explore multiple social issues, including international differences in healthcare, genetic engineering, and the parenting of terminal children. The film will spread awareness that Wolfram syndrome and other orphan diseases exist, yet are unseen by the public eye, and ignored by the healthcare system of today.
Adam Zwan being documented in his home in Wilmington, NC.
Why We Need Your Help
Once the idea for "A Light in the Shadows" was born, work began immediately. Early pre-production and necessary shooting was slow, and all funding came from the pockets of producer/director Jocelyn Leroux and Ellie White's mother, Beth. With the help of Billy Mellon, owner of the upscale restaurant "manna" in Wilmington NC, a fundraising dinner for The Ellie White Foundation for Rare Genetic Disorders was held in July of 2012. A portion of the funds raised there was used to complete the trailer seen above. An indiegogo campaign in November of 2012 was able to raise $4300, which has allowed for the full production phase to begin. The film is currently in full time production, and will continue that way for months to come. The film has shot in Colorado, North Carolina, Los Angeles, Las Vegas, New York City and St. Louis, and will continue in Nebraska, Europe and the Middle East. The more money raised through indiegogo, grants, and private donations, the quicker the film will reach completion and be able to provide research funding.
Ellie and her family in a magazine article about Ellie's mother's search for a cure
The Goal of the Film
It is our intent to screen and distribute the film as far and wide as the universe will allow. We believe it is possible to raise awareness within the medical community, as well as the population on the whole. Patients with Wolfram syndrome are often misdiagnosed or not diagnosed at all, which makes it impossible to receive proper care, and difficult to track the scope of the disorder. We also intend to create an intertwining story of interviews, animations, documentary b-roll, and archival footage in an engaging structure that educates viewers about Wolfram syndrome and other socially pertinent topics.
Adam Zwan being interviewed on green screen
From Director/Producer Jocelyn Leroux
I first met Ellie and Beth White in January of 2011. At first, I didn't realize that there was anything out of the ordinary about Ellie, she seemed just like the rest of the gifted young performers that I was working with at the time. She wears an insulin pump for her diabetes and has eyeglasses, but that isn't unusual for a child in this day and age. In the months that followed, I had the privilege of traveling with Ellie and her team "The Silhouettes" on their journey on "America's Got Talent". During this time, I witnessed the spark in Ellie that has inspired me to embark on the journey that has ultimately lead to this indiegogo campaign. I was inspired by her story, passion, innocence, and her ability to effortlessly have an effect on those around her. As a filmmaker, and more importantly as a human being, I turned to my inner self to ask what I could do to help her. I approached Beth White, Ellie's mother, about the concept of a documentary in June of 2011, five months after our initial meeting. She embraced the idea and the opportunity for Ellie's message to be spread to the masses. As production continues and I encounter more amazing patients and families, I am constantly reinspired to help them all. I have seen amazing strength in the face of countless challenges, and look forward to bringing the story to the world.
Photo Reward Option #1
Risks and Challenges
In addition to the standard obstacles facing every independent feature film, "A Light in the Shadows" also confronts the challenge of working with such highly emotional subject matter. The crew continually experiences a wide range of both joyful and tragic days, as they meet, interview and become involved with many Wolfram syndrome patients, some at much more advanced stages of the disorder than Ellie White. Because the film strives to inspire donations that will fund research to find a cure in time for Ellie and others like her, production will not document Ellie's decline in the years to come. Instead, the understanding and visualization of the decline will be manifested through other characters in the film. This within itself presents an additional challenge in storytelling. The crew of "A Light in the Shadows" has been selected with these challenges in mind, and their collective experience will allow the film to overcome the obstacles it faces.
Photo Reward Option #2
Newspaper Article on documentary being made in Wilmington, NC
"A Light in the Shadows" in the news:
Visit Ellie's foundation website at: www.EllieWhiteFoundation.org
Follow Ellie's foundation on facebook at: http://facebook.com/elliewhitefoundation
Ellie in the New York Daily News: http://www.nydailynews.com/entertainment/music-arts/girl-battling-deadly-disorder-b-debut-elf-musical-article-1.1232463
See Ellie on the news in Wilmington, NC: http://www.wwaytv3.com/news-tags/ellie-white-foundation-for-rare-genetic-disorders
Read Ellie's article in The Daily Mail: http://www.dailymail.co.uk/news/article-2175942/Little-Ellie-10-embracing-life-shes-losing-sight-hearing-incurable-rare-disease-months.html
Read Ellie's article in Encore Magazine: http://www.encorepub.com/welcome/as-far-and-wide-as-the-universe-allows/
Read Ellie's article in the Wilmington Star News: http://www.starnewsonline.com/article/20120705/ARTICLES/120709885
Read Ellie's article in The Denver Post: http://www.denverpost.com/recommended/ci_21505179
Read about Ellie's appearance on Inside Edition: http://www.insideedition.com/headlines/5163-former-americas-got-talent-contestant-fights-rare-disorder