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A little reality (continued)

BY DAN KENNEDY

THERE IS, unfortunately, a lot more to dwarfism than just being short. Even people with achondroplasia, who tend to be generally healthy, rarely escape the surgeon’s knife altogether. Matt Roloff’s wife, Amy, who’s achon, says she has never had a dwarfism-related health problem — and was stunned when their achondroplastic 12-year-old, Zachary, contracted a respiratory virus at the age of nine months that nearly killed him because of his dwarfism-narrowed breathing passages. Zack later needed a shunt for hydrocephalus and surgery to straighten his legs. (The Roloffs also have three average-size children.)

Our daughter, Becky, has had her share of problems, too. When she was five months old she caught the same respiratory virus as Zack Roloff; because she had already been suffering from obstructive sleep apnea, she had to have a tracheotomy and supplemental oxygen. She was in Mass General for two months, and when she was released, it was to a home filled with oxygen tanks and beeping monitors and nurses who would come in every night and watch over her while my wife, Barbara, and I got some much-needed sleep. She — and we — have been lucky: the tracheotomy was reversed a few months before her third birthday, and her health has been fine ever since. But we learned some unforgettable lessons about the kinds of problems that dwarf kids can run into.

Given these realities, it’s no surprise that one of the highlights at each LPA conference is the medical clinic set up by members of the organization’s medical advisory board. On Wednesday afternoon, after all the other doctors have left for the Fourth of July holiday, I hang out with Dr. Michael Ain, an orthopedic surgeon at Johns Hopkins Hospital, one the country’s leading facilities for dwarfism-related medical problems. Ain himself is an achondroplastic dwarf, a blunt, funny man with close-cropped hair. He’s full of stories — about nearly getting knocked over by Jackie Onassis when he was attending Phillips Andover Academy (she hadn’t looked down); about playing second base for the Brown University baseball team. He was graduated from Albany Medical School, in New York, which accepted him after numerous others had turned him down, convinced that his dwarfism was incompatible with the demands of the operating room.

Ain and the other doctors have set themselves up in a three-room suite on the 15th floor of the Marriott. Now it’s just him and Kathleen "Dee" Miller, who’s the clinical coordinator at Hopkins’s Greenberg Center for Skeletal Dysplasias, and who is also an achondroplastic dwarf. Ain sees patients in one of the bedrooms. First up is Marci Kobs, a 14-year-old achon who’s here with her average-size parents, Lynda and LeRoy. Marci’s been experiencing pain and numbness in her legs whenever she carries her heavy, book-laden backpack. Ain asks her to walk. He notices the surgical scars on her legs, and guesses — correctly — from the pattern that she’d undergone leg-straightening surgery by Dr. Steven Kopits, a much-beloved surgeon and dwarfism specialist who died of a brain tumor just several weeks before the conference. Ains’s prescription for Marci: a backpack on wheels. He explains to her that an achon’s spinal column is often too tight to accommodate the spinal cord within. Though surgery is sometimes required, it’s best to put that off as long as possible. "If you can walk long distances without carrying a backpack, I wouldn’t carry a backpack," Ain tells her. "What we want to do is protect your back for the next 80 years. Or maybe 90. Do you want to live to be 100?" Marci responds shyly: "I don’t know."

Next is Lauren Mayeux, 16, who the night before had played a mean hillbilly fiddle during the LPA talent show. Lauren, who’s achon, has been experiencing spasms and pain in and around the shoulder on which her violin rests, but she and her mother, Nancy, are having a hard time pinning it down. "It’s kind of vague — it’s here, it’s here," Ain says, explaining the difficulty of providing a diagnosis. He then adds that if the problem persists or gets worse, they should take the shuttle to Baltimore (the Mayeuxs live in Florida) to be examined more closely by him and another doctor. "You could fly up that morning and go home that night," he suggests.

Later, he does a follow-up examination on a 16-and-a-half-year-old achondroplastic young man named Ryan Rapert, on whom he had performed a spinal fusion two years earlier. "It looks fine, seriously. It looks awesome," Ain tells him, adding with a laugh: "Whoever did this was really smart."

Then comes a truly scary case — scary because it underlines exactly how fragile the health of many dwarf kids can be. Until this spring, the only achondroplasia-related problem troubling 11-year-old Kate Peterson was the bowing of one leg; Kopits operated on her when she was six. Then, quite suddenly, she lost the ability to walk, regained it, then lost it again. She and her mother, Jennifer, flew from their home, just outside Omaha, to Baltimore so that Ain could crack open the upper end of her spinal column to relieve the pressure and then perform a spinal fusion. Now, three months later, she walks into the hotel bedroom unassisted, looking quite healthy except for a massive head brace that’s held in place via a frame strapped around her chest and back. Ain tells Kate and her father, Russ, that she can switch from the brace to a soft cervical collar as soon as she gets home — and maybe a month or so after, get rid of that, too.

"She should chill for the next three months," Ain tells Russ Peterson, explaining, "For a fusion to be completely solid, as solid as it’s going to be, is one full year." In other words, no running, no jumping, and no swimming, which Kate loves. As for the brace, Ain tells her, "How about this — a year from now, drive over it with a car." Later, in the waiting room, her father tells me, "She’s a real brave kid. Obviously, Mom and Dad were real concerned."

The last time I see Kate is in the hotel elevator. She and her father haven’t waited until they get home — they’ve found a cervical collar in Salt Lake, and she’s wearing that instead of the head brace. With the hardware gone, it is much easier to admire her head full of long braids.

"I so couldn’t wait," she tells me, obviously pleased.

FOURTH OF JULY and, as it’s been all week, it’s hotter than hell in Salt Lake City. It’s nearly 100 degrees, dry, as if it were winter and you’d shut yourself in a tiny room with a couple of electric heaters turned up full blast. I’m at Rice-Eccles Stadium, where LPA has scored a block of front-row-center seats for something called the "Red Hot 4th."

The show is a weird combination of schmaltz, patriotism, and belligerence. The first act is a band led by Chuck Negron, the oft-rehabbed former lead singer of Three Dog Night, who rips through a surprisingly energetic and loud set of old hits. He’s followed by the alleged headliner, Kenny Loggins, who tries with limited success to rise above his innate flaccidity. We’re also treated to three huge military helicopters zooming overhead (cool, but I’m glad we aren’t celebrating an Afghan wedding or something) and an evangelical group of boy singers called Jericho Road. An elderly war hero angrily leads a recitation of the Pledge of Allegiance, the words "under God" spat out in defiance of "some judge in California," as it was put by a local news babe who’s MCing the event.

The show ends with a fireworks display accompanied by the four armed services’ official marches. Hey, this ain’t the Esplanade, you weenie (although the closing strains of the 1812 Overture are briefly heard toward the end).

The image that stays with me, though, is not of the helicopters, not of the militarism, and certainly not of Kenny Loggins. Rather, it is of the aisle next to the LPA section, filled with teenage girls, nearly all of them dwarfs, every one of them beautiful and laughing and waving her arms and swaying back and forth to the music. It is a picture of utter normality, a picture that — no matter how smart and happy and popular they may be back home — would be hard to duplicate anywhere but here.

For one week a year, they are surrounded by hundreds of people who look like them. In a culture that places outsize importance on appearance, that’s important — more important than it should be, but that’s not likely to change anytime soon.

And it’s something I’m glad my daughter is part of, and can be more a part of as she gets older.

Even if I do worry about those dances.

Dan Kennedy can be reached at dan@dankennedy.net He is writing a book on the culture of dwarfism, to be published by Rodale in the fall of 2003.

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Issue Date: July 18 - 25, 2002
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