The day a famous actress joined girls with Rett syndrome in Washington

Twenty-four years ago this week, my daughter Abby sat 5 feet from one of the world’s most famous movie stars in a hearing room in Washington, D.C., as print and television journalists recorded the biggest media circus ever staged on behalf of Abby’s disability, Rett syndrome.

The movie star was Julia Roberts, who at the time was riding a string of hits that included “Pretty Woman,” “The Pelican Brief,” “Runaway Bride,” and “Ocean’s Eleven.” The previous year, she had won the best-actress Oscar for “Erin Brockovich.” She was in Washington to urge a House Appropriations subcommittee to increase federal funding for research on Rett syndrome, which had recently killed the child of a family friend of hers, a 10-year-old who, like my daughter, was named Abigail.

The International Rett Syndrome Association, or IRSA, a precursor to today’s International Rett Syndrome Foundation, had arranged the appearance and had invited member families to come to Washington to show support and knock on congressional doors. About 20 did, including ours.

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Before the hearing, those families gathered in a side room to await Roberts’ arrival. Her front woman showed up and gave us stern instructions: Do not ask Julia for autographs. Do not touch Julia. Do not look at Julia. Do not breathe the same air as Julia. Or words to that effect, such that we were all prepared for a terrifying prima donna.

Instead, we got that rarest of things: a down-to-earth superstar. When Roberts entered the room, she immediately plunged into a scrum of 20 girls with Rett syndrome, hugging each of them in turn while they drooled all over her expensive-looking blouse and got cracker crumbs in her hair. We parents stood by amazed.

After a long wait, her time to testify before the committee arrived, and, knowing that an abundance of cameras would be recording that event, the IRSA folks planted four particularly photogenic Rett syndrome girls behind her in the hearing room. One was my daughter Abby, who was 5 at the time and, if I do say so myself, was indescribably cute, as many with Rett syndrome are in their early years.

Abby sat in her mother’s lap, and the two of them turned up in many of the shots of Roberts as she delivered her earnest plea. Probably many who saw the video coverage were heart-struck by my daughter. “Look at that poor little Rett girl. So weak she can’t even hold her head up.” In fact, that poor little Rett girl had fallen asleep.

Putting Rett on the radar

There was a lot of excitement and hope surrounding Rett syndrome at the time. The gene whose malfunction is associated with the condition had been identified just a few years earlier, in 1999, at the Baylor College of Medicine, and it felt as if breakthroughs in treatment might be imminent.

That seems like a long time ago. In fact, it was a long time ago. My wife, Donna, and I, like many parents of adults with Rett syndrome, have grown numb to the string of press releases announcing some incremental advance or discovery. The pace of progress is slow — too slow, probably, to dramatically benefit Abby, who is now 29.

But at least Rett syndrome is on the radar of many researchers and medical professionals in a way that it wasn’t 24 years ago. Maybe the Julia Roberts Show that day in Washington helped put it there. I don’t know if Roberts’ plea for additional funding actually resulted in additional funding, but certainly more Americans heard the term “Rett syndrome” that day than had ever heard it before. And, as the saying goes, that’s not nothing.

There’s a transcript of Roberts’ testimony on the official website of the U.S. Government Publishing Office. It records the moment when Kathy Hunter, the founder of IRSA, introduced the four girls behind Roberts. “These are some of our foot soldiers for Rett syndrome,” she said, “some little girls that we picked today because we wanted to show you the face of Rett syndrome and what it is like to grow up with Rett syndrome.”

And the transcriber recorded my daughter’s name as Abby “Yentslenger.”

Yentslenger, Genzlinger — close enough for government work.

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.