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She's Long on Vitality
October 12,
2002
Four-foot-tall Shirley Tillinghast learned to laugh about her height a long time ago. When you're a dwarf, your daughter may be taller than you by age 5. Shoes in your size are decorated with Barbie or The Powerpuff Girls. And strangers ask you personal questions about your sex life, or whether you can reach the stove knobs. About 60 people who can sympathize are gathering in Salina this weekend for a regional conference of the Little People of America, an organization of 8,315 adults 4 feet 10 inches or shorter. It's the first such conference in Central New York in 17 years, said Tillinghast, who, as president of the Finger Lakes chapter, is helping host families from Pennsylvania, New Jersey and New York at the Holiday Inn. It's a social event. They will dance, eat, swim and pose for a group photo. It's also practical. They can take a step-stool building class, learn how to alter clothing and share medical concerns with dwarfism expert Dr. William Mackenzie of the Alfred I. duPont Hospital for Children in Delaware. The event is especially important for parents of average height who unexpectedly conceived a dwarf child, Tillinghast said. Chances are that one in 13,500 live births will result in dwarfism - and 85 percent are born to people of average height, according to information compiled by the Greenberg Center at Johns Hopkins Medical Center. Most dwarfs "enjoy normal intelligence, normal life spans, and reasonably good health," states the Little People of America site at www.lpaonline.org. But they often can't drive a car without special pedals, see the mirrors over bathroom sinks, or climb into bed without a stool. And eye level for them is someone else's belly button. Looking for the humor
Tillinghast, a lifelong Auburn resident who says she is the only adult dwarf living there, deals with it with humor. "Someone'll say, 'What's up?' and I'll go, 'Anything taller than I am,'" she said. She always fools the guesser at the state fair - on both weight (113 pounds) and age (47). "When the guy says, '90 pounds,' I just wink at the kids and step on the scale," said Tillinghast, who works as an outpatient billing clerk at University Hospital. When she caused an avalanche at the grocery store climbing the dairy case to reach a higher item, she burst into a belly laugh. "Everything crashed down," she said. "I think it was cheeses, but I don't recall right now." And she jokes about her front-loading clothing washer. "It's better than me hanging in upside-down on a normal one," she said. "Which I have done." Fighting back
Tillinghast is the daughter of two dwarfs, the late Emma and Frank Lentini, who also had a condition called achondroplasia, with its characteristic bowed legs and pug noses. Her brother, Jerry, is 6 feet tall. Growing up, Tillinghast was tormented by other schoolchildren. Miserable in sixth grade, she switched schools. "I fought back," she said. "I used to whack kids in the knees." As a teenager, she dated tall men ("You can't dance cheek-to-cheek - unless it's one cheek to the other cheek, if you know what I mean," she chortled), but connected better with men who were dwarfs. She married David Tillinghast, the only dwarf among his tall parents' four children. Growing up on a Seneca County farm, he didn't see another dwarf until he was 14. Three times, Shirley and David Tillinghast tried for a baby. Because each dwarf had one dwarfism gene and one "average size" gene, there was a 25 percent chance a child of Shirley and David's would inherit the "average size" gene from each parent, and therefore be average height. Daughter Leann, 17, did just that. At 5 feet, 7 inches tall, she towers over her mother and wears a size 11 shoe. She was born by Caesarean section. The genetic lottery dealt a different fate to the Tillinghasts' next two children. There was a 50 percent chance their child would be a dwarf, and a 25 percent chance to inherit both dwarfism genes, a condition that ends in death at birth or just after. Marie Emma, born with the double dose, died at 5 months. Her sister, Joyce, died at 2 months. David Tillinghast, a grocery store janitor, died five years ago at age 40 of a heart problem. He was "a bit on the hefty side," his daughter said, but many little people have heart ailments. Same possibilities
Shirley Tillinghast suffers from breathing troubles, which are not helped by the cigarettes she smokes, she admitted. Dwarfs - Tillinghast actually prefers the term "people of short stature" and frowns on the derogatory "midget" - can also have neurological disabilities, orthopedic problems, and nose, ear and throat problems. But they can achieve the same range of careers as average-size people, she said. And part of the reason she travels across the country attending Little People of America conferences is to encourage the children. "If they want to be a doctor, they can be a doctor," she said. "If they want to be a lawyer, they can be a lawyer. If they want to fly that plane, they can."
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