Ithaca College Student Creates Moving Documentary on Child with Tay-Sachs Disease
ITHACA, NY — Holly Ward never spoke, but her voice still lives on thanks to Rachel Ferro, a documentary studies and production major at Ithaca College.
Ferro documented the last year of Holly’s life in “Tell Me the Day Backwards,” a feature-length film that chronicles the young girl’s battle with Tay-Sachs disease and her parents’ healing process after Holly died earlier this year at the age of two.
Tay-Sachs is a rare genetic disorder that causes a progressive deterioration of nerve cells and of mental and physical abilities, usually resulting in death by the age of four.
“I was inspired to give Holly a voice that would carry on for much longer than her life here,” Ferro said. “Even though she passed away in March, people will still know what an extraordinary person she was through the sharing of this film.”
Ferro became interested in the project after meeting Holly and her family through a shared acupuncturist. The Wards were looking for a way to memorialize their time with Holly, and Ferro knew that creating a documentary about her would be invaluable to her parents.
For Ferro, the biggest challenge was deciding how to tell Holly’s story.
“One of the things I love most about documentary is that there are endless ways to tell a story,” she said. “With a topic as delicate and painful as this one, I spent most of my time figuring out how to tell it in a way that didn’t focus solely on the pain and grief that exists within it, but also embraces the beauty and healing potential that Holly’s memory has to offer.”
What resulted is a film that she says “touches on the use of alternative therapies, similarities between birth and death, perspectives on the meaning of a full life and ultimately the strength of the human spirit.”
The film coincidentally shares its title with that of a children’s book. Ferro says it comes from a line Holly’s mother used in a letter she wrote — “Would you like me to tell you the day backwards?” — which was read at Holly’s memorial service.
A September screening of “Tell Me the Day Backwards” raised over $1,200 for the National Tay-Sachs and Allied Diseases Foundation. Ferro plans to continue to raise funds, and to continue making documentaries that explore the lives of people going through extraordinary experiences and the taboos and fears that exist around death and dying. For now, though, she’s happy that her work has made an impact on the Wards’ lives.
“The most rewarding part was watching the film with Holly’s parents in their home,” she said. “Knowing how much the project means to them is reward enough.”
Ferro is currently seeking opportunities to show her film. To host a screening or for more information on “Tell Me the Day Backwards,” visit tellmethedaybackwards.tumblr.com or contact Ferro at firstname.lastname@example.org.