Rochester (NY) Democrat and Chronicle staff writer
National environmental and health groups are beating a path to LeRoy, poking into the Genesee County community's startling cluster of teenage students with troubling neurological symptoms.
Groups led by environmental-activist icons Erin Brockovich and Lois Gibbs have been talking with parents and gathering background. A chapter of the Sierra Club has been digging into the LeRoy school's unusual connection with natural gas drilling. The Healthy Schools Network, Empire State Consumer Project and others are involved.
Leaders of these groups say authorities in New York may have acted too hastily in ruling out environmental contaminants, infectious illnesses or vaccinations as possible causes of the cluster, which now includes as many as 15 LeRoy Junior-Senior High School students who exhibit varying degrees of involuntary twitches and verbal outbursts not unlike those associated with Tourette's syndrome. Some report fainting spells and seizures, too.
The students, in both the senior and junior high parts of the building, are all girls with the possible exception of one newly diagnosed case.
Buffalo neurologists who have seen a number of the students have said the teens suffer from a psychological disorder causing physical symptoms that spread unconsciously through the student body, a finding that state health and LeRoy school officials don't seem to dispute.
But some LeRoy parents haven't bought into that diagnosis, and there now are numerous outside experts willing to help them look for alternative answers.
"We're not satisfied," said Beth Miller, who said her 16-year-old daughter Katie awoke from a nap in September with tics so severe she was taken by ambulance to an emergency room. "Other families I've talked to feel that way, too."
The LeRoy mystery-illness story has unfolded in a peculiar way. Word of students with tics and twitches circulated among families this fall, and was reported by Rochester and Buffalo television stations in early November.
But little information was made public. The families for the most part kept to themselves, and the school district cited privacy laws and revealed no details. It remained a mostly local curiosity until 10 days ago - when Miller and Katie joined another mother and afflicted daughter on NBC's Today show.
Since then, LeRoy has gone viral. Bloggers and national news outlets, particularly those of TV celebrity-doctors, have scrambled for images of symptomatic teens and argued on air and online about their diagnoses.
A neurologist from Rockland County appeared on several programs asserting that the students could suffer from a syndrome in which tic disorders can be triggered by staphylococcus bacteria or other infectious germs.
Miller, who said she now regrets going on the Today program, said her daughter and some of the other affected children will be seen by that physician, Dr. Rosario Trifiletti.
The competing psychological-disorder diagnosis - Buffalo Drs. Laszlo Mechtler and Jennifer McVige have called it both conversion disorder and mass psychogenic illness - is what's known as a diagnosis of exclusion, meaning it is applied when other more tangible explanations have been ruled out.
Miller and representatives of the environmental and health groups say not enough work has been done to exclude these other possibilities.
"Right now you have a cluster of sick kids, and nobody's quite sure what's going on. It's kind of been a rush to judgment here," said Claire Barnett, executive director of the Healthy Schools Network, a nonprofit group with offices in Washington, D.C., and Albany.
Officials at the state Department of Health, which has looked into the cluster, avoid speculating about the cause. Spokesman Jeffrey Hammond notes there are "many causes of tics-like symptoms,' and stress often makes them worse.
But Hammond did say most of the girls did not get the HPV vaccine Gardasil, so any side effects wouldn't have caused the symptoms. He said the physicians in Buffalo also ruled out infections in the patients they saw.
Hammond noted that indoor air testing done for the school district found no evidence of toxic-chemical contamination, a lack of fresh air, mold or other problems. And he argued the lack of symptoms reported by staff members and male students argued against a contaminant spread through the air.
But the environmentalists say the testing hasn't been thorough enough.
"While we don't have the answers, we are suspicious that the all-clear has been sounded on the environmental side and we don't believe that it should have been," said Brockovich, whose dogged legal research on a huge California water-contamination case gave rise to the 2000 motion picture for which Julia Roberts won an Academy Award.
Brockovich, who works with citizens in environmental cases around the country, said an associate would be in Le?Roy shortly to gather environmental samples.
Environmentalists point particularly to two provocative points that they say need to be examined.
Five natural gas wells owned by the LeRoy school district ring the junior-senior high school building, which opened in 2003. The wells have undergone the controversial procedure known as hydraulic fracturing, state environmental officials said. About 25 western New York school districts own gas wells, though none have more active wells than LeRoy.
"We believe that it would be premature to draw any correlation between these tragic and unexplained illnesses and the gas wells on the school's playing fields," said Roger Downs of the Sierra Club's Atlantic Chapter. "But we have seen no evidence that these wells were adequately considered by the Department of Health as potential contributing factors to the illnesses in the initial investigation."
Anne Rabe, a campaign coordinator for the Virginia-based Center for Health, Environment & Justice, the group founded by Lois Gibbs of Love Canal fame, said one concern is that the district may burn gas from its own wells. Natural gas usually is processed to remove toxic constituents before being piped to customers, she said. If that doesn't happen at LeRoy, or if the processing is done in a facility on school grounds, those toxics could be entering the ambient air.
"We're not saying that this is all happening. We're just saying that these things should be explored," Rabe said.
Rumors persist that the school or ground sit atop rock and soil trucked in from a part of LeRoy still suffering the after-effects of a huge spill of the toxic solvent trichloroethylene in a 1970 train derailment.
LeRoy schools superintendent Kim Cox declined to answer questions about the gas wells or fill.
The U.S. Environmental Protection Agency, which oversees ongoing cleanup of the Lehigh Valley Railroad spill, has no knowledge of fill being taken from the site, said spokesman Elias Rodriguez. But Raba's group has asked the agency to look into it because so many people swear it happened.
"It's true. We have documented proof," said Jim CQ Dupont, whose daughter is among the LeRoy students affected by the mystery illness.
"We're really looking hard at the environmental issues," he said. "You either got to figure it out or rule it out."
About 7,650 people live in the town of LeRoy, including 4,400 in the village of the same name. It's the second-most populous place in Genesee County after Batavia.
The village, on Oatka Creek, is about 20 miles southwest of Rochester.
LeRoy Junior-Senior High School is just south of the village on CQ South Street Road. The high school has roughly 400 students and the junior high roughly 200.
The area, long home to Seneca Indians, was settled by whites in the late 18th century. The town and village take their name from Herman LeRoy, a New York City merchant who invested in land on which the town was located
LeRoy's enduring claim to fame is as the birthplace of Jell-O, which a village carpenter devised in 1897. It was manufactured there until 1964. Le?Roy still is home to the Jell-O Gallery museum.