By Sean Pendergast
By Sean Pendergast
By Sean Pendergast
By Jeff Balke
By Richard Connelly
By Jeff Balke
By Casey Michel
By Craig Hlavaty
Hearing this story again, perhaps for the millionth time, Sienna admonishes her mother, explaining that all the hassle could have been avoided if Chrissy had simply brought the babies to full term: "Mom, you should've waited until we were done!"
Earlier this year, Sienna got to hang out with other primordials at the Little People of America convention in Nashville. It was perhaps the only time Sienna ever had to bend down to talk to kids her age and older. She was her usual self, darting all over the convention hall to chat with her peers. Maneuvering was more of an issue for her stepdad.
"Dad was, like, really slow, 'cause he had to, like, dodge the dwarfs," Sierra explains, before suddenly realizing something: "That'd be a fun video game."
At the convention, Sienna didn't have to explain her size to anyone, didn't have to worry about stares or slights. If you ask Sienna point-blank what it's like to be a primordial dwarf, she might ham it up and start off with, "It's kind of a big speech..."
Occasionally, kids will be mean. If they don't say something to her face, they might be overheard trading insults behind her back. When she was younger and still had the feeding tube in her stomach, kids ripped it out on more than one occasion.
"One kid, she didn't let me play with her," Sienna says, ratcheting her voice into a snobby snarl to imitate the offender. "She said, 'You can't play with me!' So my sister beat her up." (At this point, Chrissy interjects to explain that, while Sienna might have given the impression that the episode occurred last week, it actually took place when she was five).
Sienna, who is mildly learning-disabled (learning disabilities are one of a host of problems that can accompany primordial dwarfism), also gets frustrated sometimes over the incredulity of adults who don't believe she's 11. "Come on," they sometimes say, "how old are you really?"
"I'm like, 'Are you kidding me?'" Sienna says. "'Are you that retarded?'"
"Sinny!" her mom snaps. "Don't say that."
As it turns out, Sienna isn't really that brash. It's just that, at home among family, she can vent if the need arises, or embellish a story with an imaginary comeback she'd never be rude enough to say in the moment.
"I'm not a person to be messed with," she says at one point. And without missing a beat, her sister says, "Yeah, you are."
"That's not how you act," Joey Bernal says from the other room. "Stop trying to act tough. Be honest."
Honesty is valued above all else in the Bernal household, which, in addition to the twins, includes big brother Austin, 15. Honesty about Sienna's strengths and weaknesses, about not pretending she's not different. No one gets to play the Dwarf Card around here. Joey explains at one point that the family doesn't want to walk on eggshells when it comes to Sienna. It would only make her feel weird. There is an atmosphere of total openness when it comes to Sienna's dwarfism.
It appears to give Sienna confidence. She can talk nonstop and, at the merest hint of a suggestion, can bust out into a song or dance. Like Sierra, Sinny loves to sing. Taylor Swift and Justin Bieber are two of her favorite pop stars.
"Maybe you should date him," Sierra tells her sister when she mentions Bieber's name. "Y'all are about the same size."
Dr. Michael Bober of the Nemours/Alfred I. duPont Hospital for Children in Delaware is perhaps the country's leading expert in primordial dwarfism.
He recalls a watershed moment while attending a Little People of America convention: "The first time I saw a primordial dwarf," he says, perhaps unaware that that's one of the coolest ways ever to begin a story, "I was walking down a hallway of a hotel and I saw this — turned out to be a teenage boy — doing a gymnastics tumbling routine. Cartwheel after handspring after cartwheel after handspring, at amazing breakneck pace, for, I don't know, 20, 30 yards down a hallway. It was mind-boggling. And he couldn't have been much more than two, two and a half feet tall. And it was just stunning to watch. It just was mesmerizing...[I thought] 'How did that child just do that?' "
He was already running the hospital's genetics and dysmorphology clinic when, almost by chance, the primordials came into his life.
"I feel like, in a lot of ways, the families chose me," Bober says.
His predecessor at Nemours, Dr. Charles Scott, was one of the authors of a key 2004 American Journal of Medical Genetics article on primordial dwarfism. Scott and a co-author, Dr. Judith Hall, retired shortly after the article was published. Bober makes it sound like parents of primordials began contacting him only because he just happened to be around to answer Dr. Scott's phone after he retired. (A modest guy, Bober never suggests it might have been because he's a board-certified, highly skilled geneticist).
With the help of a nonprofit primordial dwarf support group called the Potentials Foundation, Bober and his colleagues are compiling primordials' medical records into a registry. The idea is to use the information to predict and better treat medical problems associated with different kinds of primordial dwarfism.
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