How ‘Silent Angels’ and Julia Roberts put Rett syndrome on the map, part 1

First in a series.

It’s October, which means it’s Rett Syndrome Awareness Month, which means it’s a good time to have an email chat with Barry Ross Rinehart. So I did, and he was gracious enough to tell me about the making of “Silent Angels,” a documentary that he directed and co-wrote and that, some 26 years ago, got the ball rolling on teaching the world about Rett syndrome, a debilitating condition that few had heard of before then.

First, full disclosure: My daughter Abby, who has Rett syndrome, is in the film. So is my wife, Donna. So is my right kneecap, and so is the famous actress Julia Roberts. As a result, I have been known to tell anyone who will listen that I once starred in a movie with Julia Roberts.

But I digress. The full title of the film is “Silent Angels: The Rett Syndrome Story,” and its broadcast on the Discovery Health Channel and TLC in 2000 really put Rett syndrome on the map, as it were. Before then, families with a child with Rett syndrome were roaming in the wilderness, many not knowing why their kid was not speaking, had lost hand use, was having seizures, and seemed mentally impaired. We were lucky in that we at least had a name for what was afflicting Abby, who was born in 1997 and began exhibiting symptoms a bit before her second birthday. A neurologist in New Brunswick, New Jersey, identified Rett syndrome as a possibility on her first visit.

Many other families at the time had been waiting years for a diagnosis, and many doctors had never heard of the condition. That’s probably hard for newly diagnosed families to grasp today, when a genetic test is available and an avalanche of information is easy to find online. In the late 1990s, becoming a citizen of Rettland, as we call it, meant encountering a lot of questions and few resources to help answer them.

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Leading by example

Among the people who had never heard of Rett syndrome at the time was Barry Ross Rinehart, who was creative director at a firm in Seattle and was at the company’s regular Monday staff meeting when an offhand request was made.

“Our receptionist said, ‘Hey, I went to high school with this guy whose mom is speaking at a family conference for, I think it’s Tourette’s syndrome, and he asked if anyone would be willing to, purely pro bono, help her create some presentation slides,’” Rinehart recalled in an email to me. “I wasn’t interested, but as I looked around the room and no one else spoke up and it was starting to feel uncomfortable, I heard my father’s voice say, ‘Lead by example.’ So I raised my hand and said, ‘Yes. I’ll help.’ When I did that, one of our other producers, Karin Gornick, also said she’d help.”

The receptionist, of course, meant “Rett,” not the unrelated “Tourette.” That simple act of hand-raising by Rinehart and Gornick (who is credited as executive producer on “Silent Angels”) continues to ripple through Rettland today, and also — teaser alert — had a dramatic personal effect on Rinehart, as we’ll see in Part 2. More immediately, it led to a meeting with Maureen Woodcock, a parent and a grandparent of children with Rett syndrome who lived in Union, Washington.

“She was an incredible storyteller, and our one-hour meeting turned into five hours,” Rinehart told me. “On our drive home, Karin and I talked about how moved we were by Maureen’s story and how perplexed we both were by the fact that neither of us, in our entire life, had ever heard of Rett syndrome before. The next day, I wrote Maureen an email thanking her for her time and said, naturally we’re going to help you with slides for your presentation, but Karin and I would also like to pool our resources and help you create a short informational video that might help raise awareness about Rett syndrome.”

They talked some more, and Woodcock asked whether, ideally, he’d want to do more than a short informational video.

“Well,” he told her, “ideally you’d make it an hourlong documentary, shoot it on film, get a celebrity to host it, and then get it on national television.”

Which is exactly what happened.

Next: Julia Roberts becomes involved, and the dream becomes a reality.

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.