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Personifying Variety Club spirit

As guests gathered for a luncheon kicking off the 48th annual Variety Kids Telethon, Sarah Kopasz worked the room like a seasoned entertainer.

Flashing a toothy smile from ear to ear, the Lewiston 9-year-old scurried around exchanging cheerful greetings, shaking hands and capturing hearts. She would've high-fived the adults if she could reach up that far.

Few in the banquet room at Chef's restaurant knew what a rough road this tiny bundle of energy had traveled on the way to becoming Celebrity Child for this year's telethon, airing from 7 a.m. to 7 p.m. today on Channel 7.

Born with a genetic disorder never before found in a female, Sarah has endured a lifelong struggle to simply stay alive.

She was diagnosed with Xq 26-28 duplication at three months in Las Vegas, where her father, David, was a food and beverage manager at MGM Grand. It's an abnormality in which "every gene in her body is skewed," said her mother, Theresa.

Doctors told the parents "not to expect a lot from her," Theresa Kopasz said. Some even doubted that Sarah, whose left leg is nearly 4 inches longer than the right, and whose stomach was severely underdeveloped, would ever walk or take nutrition without a feeding tube.

But Sarah would not be held back. From the start, her mother taught her sign language and took her for intense therapies tailored to her needs.

In 2003, after Sarah and her mom, the former Theresa Krell of Lewiston, had spent three years traveling to clinics all over the west, David Kopasz, a Kenmore native, accepted a food management post at Seneca Niagara Casino.

Two years later, Sarah entered treatment at Johns Hopkins University's Kennedy Kreiger Institute in Baltimore, which her mother had found in an online search.

Before long the little girl who had been fed through tubes since birth and "wouldn't let a spoon near her mouth" because eating was so painful, Theresa Kopasz said, was taking small bites.

Clinicians "found a formula that would let her system tolerate food, and gradually weaned her off the feeding tube," her mother said. "The goal was to have her eating 20 percent of her food by mouth," but at the end of the eight-week program "she walked out eating 100 percent."

Monitored by physicians at Women and Children's Hospital, Sarah has continued to make short strides over the last four years. The child who weighed just 11 pounds at age 2 has grown to 40 pounds, and no longer uses a walker -- not that she ever let it hinder her.

"She never knew any different, so she always tried to do everything anybody else did," Theresa Kopasz said. However, "keeping weight on her is a challenge," she said. "She is limited to small meals five times a day and still retches when she takes in two much air. Anytime she eats it's painful, but she knows that's what she must to do keep the tube out.

"She's going to have a lifetime of nutrition challenges."

Sarah, who needs almost constant attention from her mom and sister Gabrielle, a 20-year-old nursing student, also has spinal and eye problems that may require surgery.

If any of this bothers her, she isn't letting on. "Things just don't faze her. She just moves on to whatever is next," Theresa Kopasz said.

"She is small in stature but strong in spirit," David Kopasz added.

Ed DeVantier is chairman of this year's Variety Kids Telethon, which will be produced by the Variety Club of Buffalo at Adam's Mark hotel. The one-day drive, titled "Help Our Kids Smile!", aims to raise $1.5 million for Women and Children's, the Robert Warner M.D. Center for Children with Special Needs and more than two dozen other children's causes. Chevrolet dealer Duane Paddock is honorary telethon chairman.

Singers Sarah Pacheco, Mica Roberts, Mark Wills, Neal E. Boyd and Bob Anderson head the entertainment lineup. Also appearing are Mr. Food, actress Ilene Graff, Elvis tribute artist Terry Buchwald and soap star Brandon Barash.

ON THE COVER: Sarah Kopasz with her parents, David and Theresa, and her sister Gabrielle.