Section A · Page 8
The University Daily Kansan
Wednesday. April 18,2001
Slane,4-foot-7,is short on height but large on life
Continued from page 1
Standing at only 4-foot-7, Liz Slane often finds herself heads below her friends, such as Justin Harvev, St. Louis, Mo., junior, who is 6-foot-5. A mixture of genetics and disease carved out Slane's short stature.
Other than her length, Liz seemed average. She smiled and giggled, she kept her parents up at night and she had a good-sized tuft of wavy brown hair.
Then, when Liz was almost one-and a half-years old, the Slanes awoke one night to hear their daughter screaming.
"Every time we'd try to touch her and calm her down, she'd scream some more." Patty Slane said.
However, as Liz's first birthday neared, the Slanes became worried about their daughter's movements. She had all the upper body habits that a 1-year-old should have, but her lower half seemed to lag behind.
The Slanes took their daughter to the hospital in the morning where the doctor discovered a spiral fracture in Liz's shin bone.
The real little years
Somehow, in the middle of the night, Liz had tried to raise herself up in her crib, fallen and fractured her leg. At first, this almost seemed too strange to be true — putting Liz's parents under suspicion.
"They questioned me and Gary about how we couldn't know how she broke her leg," Slane said. "How could a child stand up in her crib, fall and break her leg?"
At 20 months, Liz fractured her othershs.
As a young child, Liz's disease made participating in everyday childhood activities a giant risk.
At age 2, Liz was diagnosed with the hereditary bone disease that is caused by a genetic defect that lowers the body's production of Type 1 collagen, a protein, resulting in brittle bones that break easily.
About 95 percent of Osteogenesis Imperfecta cases are hereditary. Liz is one of the 5 percent who contract it through a genetic mutation. No one else in Liz's family who was tested, from her great-grandmother to her two brothers, has the disease.
One day Liz decided to skip rope like the other girls, so she picked up a beaded jump rope and began to twirl it. For a moment her long brown hair bounced as she skipped into the air. Then she stepped on the rope, slipped on its cylindrical beads and crashed to the gym floor, screaming in pain—her leg had broken, despite the protection offered by the metal and plastic braces.
Patty Sainte said she was initially distraught that the braces had caused social problems in Liz's life, setting her apart from other kids, but not protecting her from breaks.
"But after awhile I thought it was like a sort of protection to have them anyway—I mean nobody is going to come and push over a kid with braces," Slane said.
Slane described her daughter's first braces as looking like those worn by young Forrest Gump in the 1994 movie. For the first years of her life, Liz hobbled around lock-kneel wearing the frumpy gadgets, eight pounds of leather and metal.
Liz was pleased when the braces evolved to lighter metal and plastic because, she said, "I could wear tennis shoes."
When Patty Slane took her daughter to school each year at Ascension Elementary School, the teachers were initially wary of the tiny girl with the big braces. They thought she would require constant attention, or that special activities might be needed to accommodate her.
They were wrong.
"Every teacher in elementary school would tell me midway through the year that they thought that she would be the problem, but that she'd been such a help. It was almost like they were admitting it to me." Slane said.
At Ascension, Liz met Julie
DePauw. Right away the pair clicked
—they had everything in common except braces and broken bones.
It was DePauw who stood by Liz when her differences seemed to be amplified in the looks-conscious culture of muberty.
They became best friends, and still are at the University.
According to DePauw, Liz never
Liz Slane paints a ceramic bowl at Sun Fire Ceramics, 1002 New Hampshire St., last month. The bowls were made for Into the Streets Week. Right: Slane drew a self-portrait that she has displayed on her residence hall door for three years.
"She was always the sunshine of the school," DePauw said. "She was never sullen about not being able to do things. It was a very mature attitude, especially for a little kid. She was going through things that I know I never could have handled."
showed signs of the angst that went along with being "different."
Liz and DePauw attended different high schools, but remained in contact
I z drove 40 minutes from her home
each day to reinin Hall High School, a private, Catholic high school that she chose because of its liberal philosophies and fine arts.
At Nerinx, she
"My art has always been something that people have said, 'Oh my gosh, that's so neat,'" Liz said. "So, I've never felt like I was missing out on something. I've always wanted to play soccer, but I never felt like I should be doing that rather than drawing."
played the violin, sang in the choir, was involved in the theater and concentrated on accelerated math and science classes.
Liz's artistic talents separated her from her peers in a positive way, unlike the way her physical limitations left her out.
Art was one way to vent frustrations, as well as show her talent to others. It replaced playing recess games or joining in athletic competition.
Bigtime busv-bodv
When Liz arrived in Lawrence in August 1998, she saw the University as a new beginning. She could make new friends who wouldn't have memories of her in braces. They just saw Liz Slane, St. Louis native, with her brown hair bouncing along with the movements of her tiny limbs.
She even used her artistic talents to help others, spending long hours on step stools to paint a mural at Our Little Haven, a transitional house for babies addicted to cocaine. The mural showed a blue sky cluttered with hot air balloons and was what the babies saw from their cribs below.
"I haven't had a T-square in my hand since I was born, or anything like that," Liz said. "But my mom could tell you that she knew that I was going to be an architect since I was little, because I've always pointed out cool buildings and done weird stuff like that."
They also saw a devoted architectural engineering student.
She doesn't plan to design buildings, but rather, wants to light them, which seems appropriate for some.
For this feat, she won the Girl Scout Gold Award, which elevated her to the Girl Scouts' equivalent of the Eagle Scout for boys.
"Liz was a very stationary baby, which probably helped her artistically," her mother said. "And, even as a baby, she had very fine motor skills. To keep herself busy, she would draw and color."
With her body confined to leg braces, it was through her art that Liz's body and mind moved freely.
"I got my first easel when I was three," Liz said. "My mom would constantly get me art kits from Hobby Lobby. I entered lots of art contests when I was little."
Ironically, her disease actually encouraged her art.
one who sees the brightest side of life
"Light has always turned me on. I love light," Liz said. "I could work with a firm that does only architecture and just be on a lighting team."
dent assistant makes it hard to find quiet time to study. As Liz sits on the taupe carpet of her room, her hair resting thick and heavy on her tiny shoulders, her nose is aimed at an engineering text.
Her job as a resi-
She is interrupted by a stream of Lewis residents, who grab Hershey's kisses from a bowl by the door as they come and go. Friends stop by to chat and end up staying too long, attracted to Liz's conversational skills. She has at least meeting once a day — NRHH, Hall Government, Association of University Residence Halls, Illuminating Engineering Society or Lewis and Templin Complex meeting.
"Shoe shopping is the worst because I wear a size two, it's horrible," Liz said. "I really want some of those knee-high boots that all the girls wear now. But they don't make those for kids."
Liz badly wants a pair of knee-high black leather boots to encompass the calf muscles she has gained since shedding her braces. They would also add a few inches to her height, but such boots aren't made for Liz's teeny feet.
Living little, and little drawbacks
Clothes shopping isn't any easier because of her small stature.
Liz learned to hem pants and skirts in the sixth grade. In high school, she became a prolific seamstress, designing her own skirts and pants and even patching together a quilt and pillows.
However, being a 21-year-old scanning the racks in the kiddie clothes section doesn't faze her.
Altering clothing and searching endlessly for tastful shoes are problems that Liz has come to accept.
"My bones are so fragile that my legs are bowed a little bit, so if my legs were straight then I would have been a couple of inches taller." Liz said. "Also, my back is fine, as of right now, but when I was little I had a bunch of crushed vertebrae that may have hindered my back from growing."
However, she said her height could have been even more diminutive.
"I was about two feet tall in first grade." Liz recalled.
Now, she claims to be above average
More information
For additional photos,
See www.kansan.com
for a woman with her disease
"I could have been very short, as in 4-foot and under," she said. "I think my height is a mix of genetics and my bone disease. We're short, we're italian. There aren't tall people in my family. My mom is 5 foot. I would have liked to be 5 foot, but it's not going to happen."
She has a step stool in her suite to reach her bag of Tostitos from her cupboard, two inch pedal extenders to aid her when she drives her red Jeep Cherokee and she usually stands on a chair while speaking to groups.
"When I was little, I would always want people to not talk about me wearing braces," Liz said. "And I think that may be the same with height. Maybe that's the first thing that people see. But I hope that's not the first thing they think about every time they see me."
Large triumphs
Liz's daily walk to classes this winter became a case of Russian Roulette because of numerous snow and ice storms. Each day as she left Lewis Hall she prayed for no ice, but campus sidewalls were often covered with ice patches.
Her legs would tense up each step, as she braced her body against the fall she feared could send her to the hospital.
Liz did fall twice this year but suffered only bruises and no breaks.
"It was a feeling of triumph," she said. "I fell down and I didn't break."
While Liz was a fresh man, loving college, her mother worried about her fragile little girl being away from home.
"I thought, What if there is
I thought,
'What if there's
ice?' 'What if she falls on the
stairs?" You never stop worrying, Patty Sane said. "But do I trust her? Yeah, of course I do."
Just when Slane's anxiety subsided about her daughter going off to college, she received a phone call from Liz, telling her how her boyfriend's hug had broken her rib. Her maternal anxiety returned ten-fold.
"It was scary because she hadn't had a break in a while," Patty Slane said. "It was like the break in the crib — it just wasn't supposed to haupen."
Even the optimistic Liz worried about the ramifications of that hug.
"That hug reminds her that she still was a deblitating disease.
"That was probably one of the scariest things," Liz said. "It was one of those times where it hits home how fragile I really am. That was something he did every single day. I mean it was just a hug."
Years in braces made Liz deeply appreciate the independence made possible only by her newfound mobility. Currently, she sweetly declines offers of help from well-meaning people motivated by their perceptions of her physical limitations.
Liz plans to one day face an ordeal more difficult than she's ever faced before: having children.
Whyte, her doctor, said complications that her disease would produce in pregnancy would make quite a challenge — both during pregnancy and during labor.
"With the weight gain of pregnancy, your lower limbs would be stressed and you could become less agile and this could lead to a fracture." Whyte said. "A cesarian section would also probably be necessary."
Liz expects she'll be bedridden, but what gnawats at her is not her own physical pain, but rather, the joys of motherhood the disease would deny her. For example, she knows that when she does have a child, she may not be able to hold the baby in her own arms.
"I can't carry anything over 10 pounds," she said. "I can't carry textbooks, so carrying a child would definitely be hard."
Then there's the 50 percent chance
nat her children could inherit the disease. She admits the fear terrorizes her, yet she says she is better prepared for a child with the disease than her own mother was
"Iif my kids have it, I made it, so they can make it," Liz said. "I'll have one advantage over my parents in that I'll know what they are going through."
Her greatest fear is the like-
lhood that she will lose the
mobility she gained when she
shed her braces and came to
the University.
She knows she may be con-
fined again — this time 'o a
She knows she may be confined again—this time to a wheelchair.
"When menopause comes
When my nopaque comes around and when I get older, I'll probably be in a wheelchair sooner than most women would be," Liz said. "That's the scariest thing for me because I'm so independent."
Perhaps because of the value she places on that independence, and the fragility that constantly threatens it, she has always identified with butterflies. Posters of butterflies adorn her suite, and she wears a favorite butterfly pendant around her neck.
"I've always wanted to fly," Liz said. "They have that ultimate freedom, and the freedom of flight has always attracted me because I've always been tied down."
"In my mind the butterfly is very symbolic of her," her mother said. "For her the cocoon is being trapped in braces and now she's out of the cocoon and she's beautiful and fragile, just like a butterfly."
— Edited by Jennifer Valodex