Sunday extra: Standing tall: Life is magical for Roy teenager with dwarfism

Published: Sunday, April 9 2006 12:00 a.m. MDT

18-year-old Kaycie Ashburn does schoolwork at Fremont High School with the help of a tutor.

Jeffrey D. Allred, Deseret Morning News

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.

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