It’s a big word, and Wildine Aumoithe is a little girl — so little, just 30 inches tall as she approaches her 13th birthday — but she is anything but scared of it.
“A-c-h-o-n-d-r-o-p-l-a-s-i-a,” she patiently spells for a reporter the name of the genetic condition that has kept her from growing beyond the height of the average bar stool, then helpfully cuts through the scientific jargon with a definition: “Basically it means little people.”
Though it has sentenced her to life in a world where light switches are mostly unreachable and “sitting down” at the dinner table requires an arduous climb up, where a trip to the bathroom is a complicated logistical mission and furniture more often an obstacle than a comfort, where her weak legs need constant support from a walker, Wildine mostly shrugs off achondroplasia.
“For a long time, I didn’t even realize it was a condition,” she recalls. “I just took it as, whatever.” And now that she knows, she sometimes taunts it. Though she put away her Barbies a while back as insufficiently grown-up for an almost-teenager, she’s held on to another of her dolls, Daisy, who at an Amazonian 36 inches towers over Wildine.
“I think it’s kind of cool to have a doll taller than me,” she laughs.
Even the knowledge that achondroplasia nearly killed her does not impress Wildine. Her father, Alda Juste, was telling a reporter about how the doctors at Jackson Memorial, after discovering the presence of the condition during a prenatal exam of her mother, Wilde, warned the parents to get their baby baptized as soon as she was born because she might not survive more than a few hours.
“As soon as we did that, they sent her to a hospice,” he recalls. “And after a couple of months, they noticed she hadn’t died, and they called me and said, ‘She can’t stay here no more.’ ” This sentence produces a mad cackle from Wildine, which startles the reporter but not the father.
“She has such a sense of humor,” he says, smiling and shaking his head. “She is always calling me at work and making me laugh. She is my ... my companion.”
Daddies are always impressed by their daughters, but Wildine’s indomitable cheeriness has charmed legions of doctors and social workers at University of Miami’s Mailman Center for Child Development, where she’s been a regular visitor all her life.
“I met her three years ago at the Mailman Center, and I just fell in love with her,” social worker Shelly Baer says. “All the doctors have, too. She’s just so positive and sensible, and she’s really taken charge of her own medical treatment. I was kind of taken aback at first that someone so young could be so assertive, but she knows what she’s talking about.”
And it’s true that Wildine seems to have a running head start on a medical career. She can talk knowledgeably and unselfconsciously about practically every aspect of achondroplasia, from its tendency to weaken arms and legs to the havoc it plays with internal organs (which are growing to normal size in a too-small torso). And don’t forget apnea, a breathing disorder that often afficts achondroplasia sufferers and forces them to wear an uncomfortable breathing apparatus that looks something like a Darth Vader mask — and not in cool way — while they sleep.
“Ehhh, I have one,” Wildine says dismissively. “It’s not that bad.”
Wildine expects, eventually, to undergo limb-lengthening surgery, a procedure that’s painful and to some degree controversial (some doctors believe it may do long-term nerve damage), but which might also enable her to reach 4 feet in height. Why risk it? The question makes her eyes widen. “So I could reach things,” she explains.
But surgery is probably over the horizon for now. Much closer is a motorized wheelchair, which, now that Wildine is in middle school, will enable her to go from class to class without somebody pushing a chair that’s much too heavy for her wobbly arms to propel without help. The wheelchair will be delivered any day now. But it won’t fit inside the family’s small car.
“That’s the thing I really need,” Wildine says. “They make racks that let you carry the wheelchair on the outside of the car. But they’re kind of expensive.” As in $300 or so, a sizable sum for her father, an audio-visual technician at Mount Sinai Medical Center. Another thing on her wish list: a tablet computer, light enough for her to carry around the house.
That said, Wildine quickly moves to dispel any notion that all she thinks or talks about is achondroplasia. She loves to go to the movies (“The Peanuts Movie is one of my all-time favorites”), watch TV (especially Sam & Cat, a Nickelodeon show about two teenagers who form a babysitting service after meeting in the back of a garbage truck, which “I know sounds weird, but it’s fun”) and of course the perennial favorite of all kids regardless of height, hang out with her friends.
“It’s so much fun to talk to my friends,” she says. “We talk at school and stuff. I have amazing friends.”
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