How ‘Silent Angels’ and Julia Roberts put Rett syndrome on the map, part 2
The director of a pivotal documentary tells the backstory
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Last in a series. Read part one.
In part one of this tale, Barry Ross Rinehart told us how his casual offer to help a stranger with slides for a talk about Rett syndrome led him to direct a full-length documentary, “Silent Angels: The Rett Syndrome Story,” and get it on national television in 2000. That was a watershed moment for Rett syndrome, a condition whose sufferers include my daughter Abby. Before then, few people had heard of it.
This is Rett Syndrome Awareness Month, and in some ways, Rett syndrome awareness began with “Silent Angels.”
Rinehart had agreed to make the documentary with the backing of the International Rett Syndrome Association (IRSA), a still-young organization whose main founder, Kathy Hunter, had a daughter with Rett syndrome. In “Silent Angels,” she is one of several parents who discuss their frustration with the scarcity of information available about the condition; back then, some parents waited years for a diagnosis.
It all comes together
Rinehart had never heard of the condition before he volunteered to help a Rett syndrome mother in Washington state named Maureen Woodcock make a few slides for a presentation. Woodcock was involved in Hunter’s organization, and thus “make a few slides” turned into a full-fledged documentary. But Rinehart knew he needed a well-known narrator to get television networks interested. By happenstance, another Rett syndrome family had a connection to Julia Roberts and asked Rinehart if they should see if she’d be interested.
“I laughed and said, ‘Well, if we could get the highest-paid actress in the history of the world to agree to narrate this, I guarantee I could get this on the air,’” he told me in an email interview.
“A few months later,” he said, “I found myself directing the fabulous and intelligent Julia Roberts in Brooklyn, New York. She came in wearing sunglasses, with a small entourage, and without knowing who I was came up to me and said, ‘Hi. I’m Julia.’ I shook her hand and said, ‘Hi, I’m Barry. I’ll be your director today.’”
On the first day of shooting, Rinehart was understandably nervous. He began the standard exchange with the crew: “Roll sound.” “Speed.” “Roll camera.” “Speed.” And then, from Roberts, nothing but silence.
“She just kept looking at me and then finally said, ‘Are you going to say action?’” Rinehart recalled. “I came out of my trance and said, ‘Oh! Sorry! Yes! Action!’ And she laughed and said, ‘I’m Pavlovian that way. I need to hear that word to begin.’”
Roberts’ narration is intercut with interviews with parents and home videos of youngsters with Rett syndrome. Abby, who was adorable as a toddler, makes several cameos in the documentary. In one, at the 13-minute mark in the film, my right kneecap is visible behind her as she tries unsuccessfully to stack some blocks — evidence of how Rett syndrome robs those who have it of purposeful hand use. So, yes, I starred in a movie with Julia Roberts. No autographs, please.
Finding the ending
As Rinehart neared completion of the film, he lacked one thing: an ending.
“We had a great Act One (how people got their diagnosis and what Rett syndrome is),” he wrote to me. “We had a solid Act Two (what sort of research is being done to solve Rett syndrome and how the families learn to live day-to-day with all its challenges). We needed an Act Three (a way to resolve or, at the very least, propel the viewer into a hopeful future).”
Just in time, he got his Act Three: In 1999, researchers pinpointed the gene whose malfunction brings on the condition. The film, which was broadcast on the Discovery Health Channel and TLC, ends with a lot of hope for a cure.
Today “Silent Angels” can be found on YouTube. Watching it, for my wife, Donna, and me, is bittersweet because a number of the children in it — Abby’s contemporaries — have since passed away.
Roberts helped the Rett syndrome cause again in 2002 with a much-publicized appearance before a congressional subcommittee to ask for funding. Rinehart served as a board member and then executive director of the IRSA for a time. And he ended up with a sweet footnote to his story.
“When we sold the documentary to the Discovery Networks, they assigned a seasoned and brilliant executive producer to help us shape the film into the ideal shape for final airing,” he said. “Her name was Claire Vande Polder. Today, Claire has been my wife now for 23 years.” All because he agreed to make a few slides for a stranger.
“This,” he said, “is a testimony to the power of saying ‘yes’ to someone who asks for help.”
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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