GABRIELS - Hundreds of people came out to Tucker Farms in Saturday's chilly fall weather for Rockin' for Rett, a benefit the Dalton family organized in honor of their 4-year-old daughter Emma, who has Rett syndrome.
Not only that, but the admission prices, auctions, raffles and donations added up to $17,000, with donations still coming in. That will go for research toward a cure for the severe brain development disorder.
Jen Dalton, Emma's mother, was thrilled and grateful to the community. She has been the main force behind this event, now in its second year. Last year's event raised a little more than $10,000.
"The amount of awareness we raised was amazing," she said Saturday at the farm. "The cars just kept on coming.
"It's our 'Field of Dreams.' If you build it, they will come."
Dalton said she is already starting to make plans for next year's third annual event.
There were many attractions on top of conscientiousness for a little girl: eight bands playing different styles of music, valuable auction items, pulled-pork barbecue, kettle corn and Tucker Farms' massive corn maze. While music, food and auctions might seem typical of any local fundraiser, there was an added energy at Rockin' for Rett that had people buzzing about it from Gabriels to Saranac Lake.
Ingrid Harding said she counted twice and each time estimated at least 500 people - and that was just at the mid-afternoon peak of the roughly nine-hour event. Harding had come up from Florida in her capacity as the founder and director of Girl Power 2 Cure, a nonprofit organization dedicated to raising awareness and research funds for Rett syndrome. Her 9-year-old daughter Sarah has the ailment, so she started Girl Power 2 Cure in 2006. Jen Dalton is on the group's Mothers Advisory Board.
"I've been working with Jen on the Internet for two years and never met her," she said happily as she worked at a silent auction table.
Jen Dalton said six girls with Rett syndrome were there: one each from Pennsylvania, Massachusetts, New York City, Potsdam and Malone, and Emma from Paul Smiths.
But before long, the cool air - it never got much above 50 degrees - sent Emma back home, where she lives with her father Mark, mother and older sister Sarah.
"That's one of the things with Rett: They have a hard time regulating their temperature," Jen Dalton said. "Some girls, they don't sweat. Luckily, Emma does, but the cold really gets to her."
Rett syndrome is found almost only in girls. It is hard to diagnose because its symptoms vary so much, but it often prevents its sufferers from walking, talking or effectively using their hands. Some girls get epileptic fits or need a feeding tube. Emma was spared those afflictions and is rare in that she is still gaining skills: She is starting to talk and scoot around on her bottom, although she still can't crawl.
It took 18 months and $100,000 worth of medical testing before Emma was finally diagnosed with Rett syndrome at the Children's Hospital in Boston.
"Thank goodness for insurance," Jen Dalton said.
Part of the reason for the delay is that Emma has a rare form of Rett's genetic mutation - a deletion, in which genetic information is missing instead of just being scrambled.
Rett syndrome is not curable now, but Scottish scientists have been able to reverse the disorder in mice, raising hopes that the same can be done in humans. If so, Jen Dalton said scientists might be able to use the same line of genetic research to cure other genetic disorders like Parkinson's disease, Alzheimer's disease and schizophrenia.
"If they crack the code on this, the implications could affect millions and millions," she said.
That hope energizes parents of girls with Rett syndrome around the world - a hope that was palpable at these farm festivities Saturday.
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Contact Peter Crowley at 518-891-2600 ext. 22 or pcrowley@adirondackdailyenterprise.com.
