Face Value
Kelley Sperry was bullied and teased for the way she looks. Then she found true friends.
By Lisa Collier Cool
From Reader's Digest
June 2005
hangout, with kids laughing and splashing, and
their parents clustering around the barbecue on
weekends, as Jay grilled platters of his favorite
firehouse recipes and served them with a
flourish.
It's Friday night, and Kelley Sperry is nervous as
she gets ready for a Valentine's Day dance at the
recreation center. Over and over, the 13-year-old
checks herself in the mirror. "Is this shirt
dorky?" she asks. After her older brothers assure
her it's the coolest, she twirls around and
inspects her hair from every angle. "The back
looks funny," she insists, grabbing her curling
iron to fix a few ringlets. A minute later, she's
unhappy with her makeup. She smooths on more
foundation and an extra coat of sparkly blue eye
shadow, and then shakes her head. "Maybe I
should just start over."
When Kelley was two, her parents noticed little
white spots on her neck and a few gray hairs. At
age five, her right nostril was slightly smaller
than the left. One doctor diagnosed vitiligo, a
disorder that causes uneven skin pigmentation,
but the cream he prescribed didn't help. And
when the Sperrys consulted an ear, nose and
throat specialist, the doctor didn't see anything to
worry about. "His attitude was, 'So what?
Everybody has little imperfections.' He said if
her nostrils still bothered us when she was a
teenager, we could take her to a plastic surgeon
for a nose job," Donna says. "We felt we were
being scolded for being too focused on our
daughter's looks."
Kelley has more reason than most girls her age
to worry about her looks. She has a rare disorder
that's making half of her face waste away. Little
by little, her right eye is sinking in its socket.
One side of her button nose is shrinking and
twisting. Her lip has lifted up, as if frozen into a
perpetual sneer. "I don't know what I'll look like
when I'm older," says Kelley, a bright girl who
earns mostly A's and B's in school, loves country
music and Chinese food, and has a secret crush
on a boy in her eighth-grade class. "I just hope
people will see me for what's on the inside."
Still, they hoped the doctor was right. There was
little change until Kelley turned nine in fourth
grade, when her eye began to "sink," her nose to
twist and her lip to pull up. Her face began to
change dramatically. She pretended the stares
and taunts didn't bother her, but the shouts of
"Hey, Crooked Nose" were hard to ignore. And
she especially hated it when kids at school
contorted their lips into a cruel parody of hers.
"They called it 'the Kelley face,' " she says.
"And everybody thought it was so funny. When
I sat down at a table for lunch, people moved
away like I was contagious. I started spending
recess helping the janitor, so I didn't have to see
the kids."
When Kelley was born on August 1, 1991, her
parents, Jay and Donna Sperry, felt like the
luckiest couple in the world. "As soon as the
doctor said, 'It's a girl,' we were so excited," says
Donna, a 46-year-old elementary school teacher.
"With our two older sons, Dillon and Jesse, we
felt we now had a perfect family." They took her
home to their cedar-shingled ranch on a hilly
road, not far from the house where Jay (now a
lieutenant in the fire department) grew up in
Westminster, Colorado.
Gradually, she began to shut everyone out -even her parents. Often, she came home in tears.
But when the Sperrys asked what was wrong,
They saved enough to add a deck and a small
pool, and their home became the neighborhood
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what triggers PRS's strange symptoms, and
there's no cure. The only good news: It's not
fatal, and after several years of destruction, it
may stop as mysteriously as it starts. If that
happens for Kelley, she may be able to have
plastic surgery to repair some of the damage.
she'd get angry and say she didn't want to talk
about it. Then, after days of stony silence,
Kelley would get so upset that everything would
come spilling out: how she hated to leave the
house, didn't want to go to school anymore, and
wished everyone would just leave her alone. "A
lot of people were picking on me and there was
nothing I could do about it," says Kelley. "I felt
very bad about myself, and never wanted to look
in a mirror."
Although the family tried to resume everyday
life after Kelley's diagnosis, it was difficult. The
crisis also took a toll on their sons. Dillon, now
19, gave up in school, while 15-year-old Jesse's
grades plunged from A's to C's. And with the
fiery temper redheads are famous for, the
younger boy started getting into arguments at
school, sticking up for his sister. But he also
resented his protective role. "Why is everything
always about Kelley?" he asked his parents
angrily, leaving another question unspoken.
Didn't they love him too?
When Donna tried to talk to the bullies' parents,
things only got worse. They often didn't believe
her, and arguments followed. "It was the notmy-child syndrome," she says. "One person said
that if her kid had made a face at Kelley, then
she must have done something to provoke it.
Another woman, who used to be a friend,
screamed at me because we wouldn't let her
daughter come over anymore. But when I said
that her girl was tormenting Kelley, she wouldn't
listen." Eventually, Donna and Jay stopped
speaking to several of their neighbors. Their
pool sat empty, the backyard silent.
To shore up Kelley's self-esteem, her parents
took her to a therapist, but that didn't help. She
remained unhappy and withdrawn. And while
Donna's colleagues and Jay's buddies from the
fire department were supportive, most people
weren't, says Donna. "We had a close circle of
friends, and one by one, many of them
disappeared. Some of them weren't comfortable,
so they stayed away. Others were offended
because I didn't go to their party, wasn't the
happy-go-lucky person who used to say, 'Come
over for a swim,' or expected them to be
accountable for their kids' behavior. It was a
very hurtful and lonely time for our family."
The Sperrys focused on trying to get their
daughter diagnosed. But it wasn't until August
2000 that one of the dozen doctors finally
identified the problem: Parry-Romberg
syndrome (PRS), a condition that attacks skin,
bones and muscles on one side of the face. And
the damage can go even deeper than that, the
Sperrys soon discovered. Kelley was nine when
the first stroke hit, while she and her mom were
in church. Just for a moment, she went blind;
then she could see the altar again. Other small
strokes followed, stealing much of her vision on
the right side.
Kelley found some support online. Still, the
teasing kept escalating, especially in the
afternoon, when classes let out. One day Kelley
was leaving the school grounds when a boy
blocked her way. "Hey, Funny Face," he jeered,
looking around to see if the kids waiting for the
bus were appreciating his wit. "You don't need
surgery, because I'll rearrange your face for you
-- with this!" He made a fist, then gave Kelley a
shove that sent her to the ground. Other kids
laughed as she scrambled to pick up the books
and papers that spilled from her backpack,
frantic to escape before anyone saw her cry.
"I was freaking out," says Donna. "Doctors were
telling us that we had to sit there and watch our
kid's face disappear, and there was nothing we
could do about it." She spent sleepless nights at
her computer, trying to find out more. As faces
of PRS patients with missing jaws or gaping
holes in their cheeks filled her screen, she'd call
her sister at 3 a.m. "We'd cry together, because I
was so scared and confused. I couldn't get those
horrifying photos out of my mind."
Another after-school confrontation a few weeks
later was just as scary. A girl dressed in hip-hop
The disease is very unpredictable. No one knows
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clothing thought Kelley, whose facial expression
can appear unfriendly, was sneering at her.
"What are you looking at?" she demanded.
"Nothing," Kelley said, lowering her eyes to
avoid further offense. The sixth-grader wasn't
satisfied. Reaching in her oversized jeans, she
pulled out a pocketknife and waved it
menacingly. "Want to fight me?" she taunted. As
Kelley backed away in fear, ready to run home
as fast as she could, the girl grabbed her shirt
and snarled one final threat, "Don't tell anybody,
or you'll be sorry."
Kelley's looks were never an issue to the
Morrisons, who are the parents of two sons.
"Donna explained the disorder, and I said, 'I'm
sorry that happened.' My reaction was
compassion and sympathy," says Marolyne, who
works at a grocery store. "I also thought Kelley
was lucky to have Jay and Donna for parents.
They help her feel like an everyday girl, instead
of feeling sorry for herself."
Another neighbor, Egle Zableckas, MD, became
Kelley's doctor. "It was a challenge, because
Parry-Romberg syndrome is so rare that we
don't learn about it in medical school," says the
Lithuanian-born family physician, who educated
herself about the condition. Dr. Zableckas's
matter-of-fact attitude was a relief to Jay and
Donna. Some doctors they'd met treated their
daughter as a medical curiosity, or brought
medical students into the exam room to stare at
her face.
But Kelley refused to be intimidated into
silence. She told her dad, who stormed over to
the principal's office, demanding an end to the
harassment. Kelley's teachers tried to protect
her, but kids still found ways to get to her. In
April 2003, Jay pulled Kelley out of school.
"She was being tormented, and it was tearing me
up to see her treated like that," Jay says. "We
started thinking that it was time for a fresh start,
somewhere else. I'd lived in Westminster my
whole life, but we didn't belong there anymore."
Kelley wasn't sure whether to be excited or
scared about the start of school in September
2003. But Windsor Middle School has zero
tolerance for teasing or bullying, and emphasizes
respect for its students and the rules. "We told
the teachers to watch out for anything that might
make her uncomfortable," says assistant
principal Joe Ahlbrandt.
The Sperrys put their house on the market and
spent their weekends exploring Colorado,
looking for a place that felt like home. As soon
as they saw Windsor, a placid community with a
view of the Rocky Mountains, they knew they'd
found it. They fell in love with the wide-open
spaces, dotted with small subdivisions and farms
where cows and horses graze. To Jay, it looked
like a Norman Rockwell small town, complete
with an old-fashioned soda fountain. Donna
liked it when strangers smiled at her on Main
Street, and a rosy-cheeked little boy said, "Good
morning, ma'am."
On the first day of seventh grade, a group of
girls invited her to sit with them at lunch. But
she said no, remembering children at her old
school who pretended to be friendly and then
made fun of her behind her back. It was better to
eat alone, she thought, than risk getting hurt
again. Day after day, she wistfully sat down to
her solitary meal. It took six weeks to muster the
courage to come out of her shell. "I began to
trust the kids here, because they treated me
better." The next time the girls asked her to sit
with them, she pulled up a chair and joined the
chatter about TV shows, hairstyles and which
boys were hotties.
Dillon and Jesse hated to leave old friends
behind, but Kelley felt a stirring of hope. Maybe
these people would be different, she thought, as
she helped her parents comb the real estate
listings to find just the right house: a freshly
painted Colonial on a corner lot, next to a large
pond where they could spend summer
afternoons fishing. Soon after they moved in, a
little black Scottie dog bounded over, followed
by his owners, Marolyne and Wally Morrison.
That created an instant bond, and the family had
found their first friends, right next door.
Before long, her phone was ringing with calls
from a 14-year-old cheerleader named Breanne
Graff, who has a special nickname for Kelley.
"Some people asked me what's up with
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KellBell's face, or why I like her. I tell them that
they shouldn't judge her by her appearance,
because she has the coolest personality and is a
lot of fun to be around. No matter what, I stand
up for her, because what hurts her, hurts me." To
make other friends, Kelley volunteered to
manage the girls' basketball team. Kids started to
drop by after school, at first just a few, then so
many that her dad was busy at the barbecue
again, doing what he loves best: making a
hungry crowd happy. "One day, I realized that I
was actually popular," she says, sounding a little
amazed.
Sometimes, however, reminders of her old life
intrude. While she was on a class trip last year,
she saw a bus full of kids from another school
staring at her. Some of the children were making
the Kelley face, and got a stern scolding from a
Windsor teacher. Recently, a bully from
Westminster sent her an e-mail teasing her about
her nice house. "If your parents are so rich," he
wrote, "why don't they get your ugly face
fixed?"
In the past, these insults would have made her
cry for hours. But now, she shrugs them off.
"I'm comfortable with myself, and if somebody
else isn't, that's their problem," says Kelley, who
dreams of becoming a lawyer. "I want to help
people who are victims of crimes or aren't being
treated right. I think I'd be really good at that."
Although her disease has not abated and her
symptoms continue to evolve, doctors say
Kelley's is not a severe case. She will probably
always look different from her friends, even if
eventual reconstructive surgery improves her
appearance. But, as she has learned more
profoundly than most kids her age, Kelley
knows it's what's inside that counts.
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