Charles Ashburn once tried to explain to his daughter that Harry Potter is not an actual real live person. Kaycie cried and refused to believe it, and then, when Charles didn't press the issue, things went back to the way they were before at the Ashburn house where everybody agrees that Harry Potter is Kaycie's personal friend.
The thing about Harry is that he's not only magical, he's timeless: 15 or 13 or 11 years old, depending on which movie version you pop into the DVD player. In that way he's a lot like Kaycie, who is simultaneously 18 and 4 and 2.
Kaycie has a rare form of dwarfism that has stunted her growth at 2 feet 10 inches tall, shorter than her 3-year-old nephew, Taven. In some cases, children with Kaycie's kind of dwarfism have grown into small adults who go on to college, but Kaycie's intellectual development was stunted as well. Although she turned 18 last December, her parents figure that intellectually she's at the level of a 4-year-old. Emotionally, the demarcation is a little less clear: Sometimes Kaycie will shut the door to her bedroom so she can be alone and dance to Jesse McCartney; but when Taven comes over she loves to put on her Harry Potter costume and have a little duel with some "Star Wars" light sabers.
Kaycie is now a sophomore at Fremont High School in the rural Weber County community of Plain City, where she takes chorus and drama, as well as resource classes. Embraced figuratively and literally by the students at Fremont, Kaycie also attends every basketball game and usually has a date to the school dances.
One morning earlier this year, Kaycie sat in her chorus class waiting for the teacher to arrive.
"Sometimes I confuse Harry," Kaycie told the other altos in the first row, who talked about homework and clothes but also were happy to talk about a fictional wizard.
To pass the time, Morgan Dodge took Kaycie up to the board and offered to help her write something. A letter, Kaycie decided.
"Harry Potter," Morgan wrote as Kaycie dictated. "Will you take me to the dance?"
At Fremont High, Kaycie has a student escort as she moves from class to class. Sometimes the escort will walk beside her; sometimes, if the halls are crowded and the next class is too far, the escort will carry her. At lunchtime, Kaycie sits on a booster seat in the cafeteria, often next to her best friend, Marcie Turley. Marcie, who was born with Down syndrome, has been Kaycie's constant companion since they were infants together in the newborn ICU.
Wendy Ashburn's obstetrician realized something was wrong about midway through the pregnancy. The diagnosis wasn't clear but the prognosis was distressing: The baby probably would die at birth, if not before, the doctor said, which is why she was taken early a decision that probably affected Kaycie's intellectual development, Wendy says.
When Kaycie lived, doctors listed her as "failure to thrive." She weighed 1 pound 6 ounces and was 11 1/2 inches long, about the length of a Barbie doll, Wendy points out. Kaycie's condition is so rare that it took a couple of years for Utah doctors to zero in on a diagnosis. Before that, doctors gave her growth hormones, which only made her fat.
There are 200 types of dwarfism. Kaycie's type falls into a group called primordial, the smallest of the dwarfs. Even at the annual Small People's Convention, people with Majewski Osteodysplastic Promordial Dwarfism type II stand out as tiny. Physical characteristics include small heads, prominent noses, high squeaky voices that are sometimes hard to understand, small or missing teeth and a "pleasant, outgoing, sociable personality," according to a recent study in the American Journal of Medical Genetics. As teenagers they will usually already need reading glasses and sometimes false teeth, and at 20 might develop a cataract or need a hip replacement, if they could find someone to make one small enough.
"The oldest known living affected individual is 37," the study's authors wrote in 2004, "a woman who is postmenopausal and wizened in appearance."
"No one knows with any degree of certainty how many MOPD II patients there are in the United States (or) in the world," says geneticist and physician Charles I. Scott Jr. of the Alfred I. duPont Hospital for Children in Wilmington, Del., who wrote the study. There are roughly 60 case reports in the medical literature, Scott said in a recent e-mail. He guesses there are more that have been diagnosed but never published in the scientific literature, and more may have been born with the syndrome but never given a specific diagnosis or were given an incorrect diagnosis.
The first person identified with the syndrome, according to the journal article, was born in Mexico in 1864 and is said to have been 7 inches long at birth. At the age of 12, Lucia Zarate was 20 inches high and weighed 5 pounds. Believed to be the smallest woman who ever lived, she became one of Barnum and Bailey's major attractions, was described as "cheerful, loquacious and beloved," and is reported to have died of exposure in a snowstorm at age 26 when her circus train tried to cross the Rocky Mountains.
Sideshows have long since given way to mainstreaming, and at Fremont High Kaycie is both a novelty and just another student.
"I'm impressed with the inclusive nature of the students at Fremont," says Kaycie's father. "I'm impressed with their maturity." He wonders, though, what will happen when Kaycie finally graduates from high school at age 20 and her classmates move on to college and jobs.
Charles wishes that strangers would learn not to stare but would come up and say "Tell me about your child." He wishes people wouldn't say "you must be special people to have a special child." Sure, he says, he and Wendy feel blessed to have Kaycie, who is the third-oldest of the Ashburns' four daughters, "but it takes a while to get there." Don't be afraid to invite children with disabilities to parties, he says. "And don't be afraid to help out. Offer to baby-sit. Get to know the child."
On a frigid night earlier this winter, Kaycie and Marcie sat in student body president Ashley Friedli's car on their way to a basketball game. Ashley had turned on some Disney music. Kaycie, wearing her letter sweater, was sitting in her car seat in the back; Marcie was sitting in the front.
"Knock, knock," said Kaycie.
"Who's there?" asked Marcie.
"Harry Potter who?"
"Harry Potter my friend."
Ashley carried Kaycie through the parking lot into the gym, then sat her on her lap to watch the Silver Wolves run up and down the court. Even if Fremont loses, Kaycie always has a good time and always returns home believing her team won.
Harry didn't end up inviting Kaycie to the dance. Anyway, it was a girl's choice, so Kaycie invited Todd Spencer, the affable student body vice president who had taken her to the homecoming dance last fall.
In high school, as at Hogwarts, there is a lot of posturing and trying on of personalities and looks. At Fremont, girls might come to school wearing fluffy bedroom slippers or black belts lined with metal studs. In high school, as at Hogwarts, some people are comfortable in their own skins, and some aren't.
"Kaycie and Marcie are the most popular kids at school," says Ashley. "They aren't afraid to talk to anyone."
At Kaycie's house in Roy, before the dance, five couples sat around the kitchen table. Kaycie was sitting in a booster seat next to Todd. She asked him to cut her spaghetti. Later, Kaycie noticed she had spilled some sauce on her shirt and Todd said, "I probably spilled, too. We'll match."1 comment on this story
At the end of the meal, Kaycie said, "My dad is awesome. He's pretty cool." The students said a rousing "hip, hip, hooray" for Charles and Wendy. Then Todd lifted Kaycie out of her booster seat and Wendy zipped up Kaycie's parka, Todd handed Kaycie a bouquet of miniature roses and buckled her into her car seat, and they were off.
"Do you think Harry Potter will come?" Kaycie asks as they head down the country roads.
"He's doing his homework," Todd says.
"Where is Harry's school?" Kaycie wants to know.
"You just have to get on the Hogwarts Express," Todd says.
"Does it take forever?"
"It takes a while."It takes only 20 minutes to get to Fremont High. When they get there, Kaycie and Todd get their pictures taken and then join the rest of the students on the dance floor. Todd picks up Kaycie and sways to the music. And then it's a fast song. He twirls Kaycie, and then Braxton Ropelato picks her up and gives her a spin, and then Paul Hancock, and then Dan Anderson, and then everybody is dancing in a circle, with Kaycie in the middle, and everybody is smiling and, even though Harry Potter couldn't make it, Kaycie is having a magical time.