By Julie Kiefer, manager of science communications and Nicholas McGregor, senior communications editor for University of Utah Health.
University of Utah Health is proud to present “One in a Million,” an original short documentary co-directed by two acclaimed independent filmmakers, Jeremiah Zagar and Ross Kauffman. To learn more about the movie and the science behind the story go to oneinamillion.uofuhealth.org.
The film tells the story of Tyler, who lost his ability to walk, see, and hear by the time he was 10. The cause remained a mystery until U of U Health scientists searched his DNA for clues. What they found led to a discovery that changed the life of one remarkable boy.
The short film premiered at the 2019 Sundance Festival to uproarious applause from the audience with hardly a dry eye in the house. During the Q&A afterward, Tyler’s mother, August Teuscher, described the relief the diagnosis brought the family.
“The sadness and despair were destroying our family. When we got an answer, those stages of grief were gone. They were replaced by hope.”
Last November, two acclaimed filmmakers and award-winning Sundance Institute veterans traveled to Utah to document Tyler’s journey. Filmmaker Jeremiah Zagar directed “We the Animals,” recently nominated for five Independent Spirit Awards. Ross Kauffman is the Academy Award-winning filmmaker of the documentary “Born into Brothels”and “Tigerland,” the latter an official selection in the 2019 Sundance Film festival.
“Hope is always my motivation when taking on a project, whether it be a feature-length documentary or a short film,” said Kauffman. “’One in a Million’ is a story that lifts the spirit and creates a space to understand the intricacies of life.”
The renowned filmmakers were drawn to Tyler’s unwavering spirit and incredible recovery, made possible by a diagnosis from the Penelope Program for rare and undiagnosed diseases at U of U Health. The program focuses on tackling some of the most complex medical cases in the country by searching for diagnoses for diseases that have remained unsolved.
The Penelope Program combines the expertise of medical specialists, comprehensive care doctors and molecular geneticists who thoroughly examine each patient, and sequence and analyze their DNA. In this case, the answer led to a treatment that significantly improved Tyler’s quality of life. He went from being on palliative care to gaining strength and endurance and is now a happy and content 15-year old boy. He has mostly been out of the hospital ever since.
“What they’re doing at University of Utah Health is humbling,” said co-director Zagar during the Q&A. “The Penelope Program unites doctors, clinicians, and scientists in genomic research. And it’s not happening in quite in the same way anywhere else in the world.”
The Penelope Program is made possible by a collaboration between University of Utah Health, ARUP Laboratories, the USTAR Center for Genetic Discovery, and originated at the Department of Pediatrics at University of Utah Health. The collaboration is just one of the unique strengths the program can offer families—the second is a promise that even without an initial diagnosis, the Penelope Program will never stop trying to figure it out, said Lorenzo Botto, the doctor leading Tyler’s diagnosis and treatment.
“Why do we spend so much time and resources on conditions like Tyler’s, whose is one in a million?” Lorenzo Botto continued. “One child in a million is an important child.”
For the Teuschers, the chance to tell their story was a comfort.
“Making this film was the most beautiful experience of our life,” said August Teuscher. “There was a beautiful human connection, and it was very healing for me to talk about it. So many things were washed away.”