Academy Award nominated actress, Mary McDonnell, has lent her voice to a new documentary film depicting life with the rare disorder Menkes Disease.
Boys with this genetic disorder generally do not live past ten years of age unless they are treated within days of birth. Filmmaker Daniel DeFabio made the documentary to bring additional awareness, in the hope that more infants can be treated before it is too late. DeFabio had done work for the TNT program “The Closer” and was able to get an early draft of the documentary to Ms. McDonnell through a producer. After viewing, she was generous enough to donate her talents to the cause and recorded the narration for the 12 minute film.
McDonell is known for her roles in Dances with Wolves, Independence Day, Battlestar Galactica, Major Crimes and the John Sayles films Passion Fish and Matewan.
DeFabio, whose six year old son has the rare disorder, made the documentary to show the dire disease in the context of three families who manage to live joyful, hopeful lives despite the diagnosis. “The facts of this disease are brutal,” says DeFabio “And when you google Menkes there’s no good news. This film doesn’t pretend it’s good news but it might be a comfort to those just getting a diagnosis to know how other have gone through it.”
The film also addresses the best options for treatment in a clinical trial with interviews from the National Institutes of Health and the National Organization for Rare Disorders.
DeFabio’s only prior documentary dealt with the healing waters of Ballston Spa, NY in 1804.
The film “Menkes Disease: Finding Help & Hope” will have its US film festival premiere August 7th
at The Ballston Spa Film Festival in Ballston Spa, NY. bspafilm.org