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Sackets Harbor Central sixth-grader diagnosed with multiple sclerosis

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DEXTER — Lynsey M. Filley, 12, has always been something special to her mother, Amy R.

Mrs. Filley said for as long as she can remember, Lynsey has put others above herself and has befriended and helped disabled children. But last year, Lynsey began to experience headaches, numbness and balance issues. Those problems intensified at the beginning of the school year, and later in the fall, Lynsey was diagnosed as one of about 10,000 children in the nation living with multiple sclerosis.

“She was having bad headaches, multiple headaches, and I passed it off as her going into her teens,” Mrs. Filley said. “It started happening more frequently.”

Within a couple of weeks, the active preteenager became exhausted and weak after going on her daily mile runs and playing basketball. Mrs. Filley said at one point, Lynsey couldn’t even make a basket — something that was unheard of for the overachieving athlete. Mrs. Filley said the sixth-grader at Sackets Harbor Central School chalked it up to being lazy, so her mother offered encouraging advice to keep trying.

Soon after, Lynsey began to fall frequently. She fell while playing soccer and fractured her left arm, and kept falling. Then, her right side often became numb. Mrs. Filley said she became increasingly worried, and at a follow-up appointment with Lynsey’s pediatrician, Dr. Alfred L. Gianfagna, he ran multiple tests. No results came that day, Oct. 1, but Dr. Gianfagna had Lynsey come back daily to monitor her deteriorating condition.

“The progression (of numbness) over the course of days went from her foot to her shin, and she’d feel numbness in her face,” Mrs. Filley said. “I was very nervous.”

An appointment was scheduled more than a week out to see a neurologist at the University of Rochester Medical Center.

On Oct. 4, the Filleys were on their way to Rochester with some friends to attend an apple festival. Lynsey appeared to be fine. Halfway through the drive, Mrs. Filley received a call from Dr. Gianfagna; he wanted her to go to the University of Rochester Medical Center’s emergency room immediately.

The Filleys weren’t told why, and panic began to set in. After staff ran multiple tests, Mrs. Filley said, doctors were positive Lynsey had multiple sclerosis. A spinal tap confirmed it.

“All of it started building up, and it came to a head right there,” Mrs. Filley said. “She couldn’t walk. It was the scariest thing of all my life. We got to the hospital and she couldn’t walk, talk, had slurred speech, was white as a ghost, and I was like, ‘Fix her.’”

Eight days later, Lynsey was released from the hospital.

She had been on treatments and medications, but Lynsey has returned to the University of Rochester Medical Center three times since then. Her multiple sclerosis is aggressive, and just when she was feeling OK, the disease would take over, Mrs. Filley said.

“I never realized how MS was until Lynsey was diagnosed,” she said. “I can’t believe how it goes unnoticed.”

According to the National Multiple Sclerosis Society, the course of the disease tends to be slower in children, “but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.” While its cause is unknown, “scientists believe the disease is triggered by as-yet-unidentified environmental factor(s) in a person who is genetically predisposed to respond.” No one in Mrs. Filley’s family, nor her husband, Alfred B.’s, family, is known to have MS. Multiple sclerosis is a disease of the central nervous system that “disrupts the flow of information within the brain, and between the brain and body.”

Dr. Megan Hyland, a neurologist at the University of Rochester Medical Center, said MS isn’t thought to shorten one’s lifespan. Depending on how aggressive it is, how a patient responds to treatment and how frequent episodes are could mean the difference between walking without assistance, walking with a cane or needing a wheelchair, she said.

Lynsey is not a patient of Dr. Hyland, so the neurologist could not speak about her case. Lynsey sees Dr. Robert Stone, who was unavailable Thursday.

There isn’t a cure for MS, but Dr. Hyland said treatment and medication may help prevent any new inflammations that lead to the breakdown of nerves.

Going forward, Lynsey will have monthly shots, administered by her mother.

Mrs. Filley said there is no specific prognosis. If Lynsey’s MS episodes get under control, she “could be a normal kid.”

“We never know how she’s going to feel,” Mrs. Filley said. “She’s just a strong individual that pushes through it.”

Even when Lynsey was in the hospital and was weak, she still used what little energy she had to teach younger children how to play basketball. By the time she left the hospital, Mrs. Filley said, all the children knew her.

Mrs. Filley said her daughter doesn’t want people to feel sorry for her, and soon Mrs. Filley said she will pay it forward to community members who have helped her family through hard times. The community will come together again, beginning at noon Saturday at Sackets Harbor Central School, 215 S. Broad St. Sponsored by the Sulphur Springs Ladies Auxiliary, the benefit will feature both a live and a silent auction with 250 items, a chicken barbecue, entertainment and face painting. All proceeds will go toward Lynsey’s travel and medical expenses.

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