I had never heard of Rett Syndrome when a Rockland resident contacted me about a year and a half ago asking me to help her publicize a fundraising event.

I wrote a story after talking to two Suffern women who described their anguish watching their daughers struggle with the disease.

The autism-like disorder appears almost exclusively in girls. Girls with the syndrome appear normal during the first months of their lives. But around the time of their first birthday, they start to lose their speech and motor skills.

One of the moms I talked to described the onset of the disorder this way:
“I saw all the light, all the sparkle do out of my daughter’s eyes.”

Most girls develop repetitive hand movements, irregular breathing, seizures and extreme motor control problems.

Almost all Rett girls lose the ability to walk and talk.

Rett families were overjoyed late last week to read about a stunning “research study”:http://www.rsrf.org/reversal_experiment/index.html done by scientists in Scotland.

The researchers in effect reversed the symptoms of the disorder in mice with the disease by blocking a malfunctioning gene that is known to be the cause of the disease.

The research was limited to mice. But to people like Suffern resident Jennifer Lopez, whose 5-year-old daughter Samantha has the disease, it’s a signal that her daughter – and others like her – might some day be cured.

“I cried when I heard the news,” Jennifer Lopez said. “”It means that in 10 years I might be teaching my daughter to talk. She won’t have to live her whole life with Rett.”

She and two other Rockland mothers of Rett daughters have held walk-a-thons, fashion shnows, auctions and other events to raise money for reasarch. Lopez estimates that they have raised half a million dollars over the past several years.

That money has been donated to the Rett Syndrome Research Foundation in Cincinnati.

The organization provided funding for the University of Edinburgh researchers who made the discovery.

“This is everything we’ve worked for,” Lopez said. “It’s opening the door for treatment or a cure.”