KUSA – Beauty is only skin deep. Everyone knows that. But our actions don’t always reflect that understanding.
For a clear picture of what that means we turn to the story of a teenager, yes a teenager.
Seventeen-year-old Kelley Sperry is surrounded by peers that many of us might view as self absorbed, shallow and obsessed with looks. Kelley is the exception.
“If you’re not going to accept me for what I look like, you’re not going to accept me for who I am on the inside,” she said.
Like many teenagers, Kelley’s personality is complex to say the least. She is bright, funny, blunt, determined, fiercely independent and extremely tolerant.
Her mom, Donna, said, “It’s interesting how much more tolerant she is of people not accepting her difference. I don’t like to walk behind her in a store and hear people walk by saying did you see that girl’s face? Or what’s up with her? I just want to turn around and say you know what? What you did was rude and hurtful and you need to stop.”
Kelley’s tolerance was a learned skill, after years of insults. They started when Kelley was in the third grade. That’s when she was diagnosed with Parry Romberg Syndrome. It is a rare disorder, characterized by the progressive degeneration of the soft tissue, muscle and sometimes bone in half of the face. The symptoms usually appear during the first decade of life, with the majority of affected individuals experiencing symptoms before age 20.
Ever since Kelley was a little girl, she’s been watching one side of her face slowly melt away. In elementary school the cruel taunting began, as children pointed out her differences.
Unfortunately for her parents, the treatment she endured by others was only one concern. The health issues associated with Romberg’s were much more serious. Over the past several years, Kelley has survived several mini-strokes and suffered with severe migraine headaches and seizures.
Her dad, Jay, said, “She’ll have headaches where she can’t even hardly move without making it worse, and she’ll go to school and be nice to everybody and laugh.”
While coping with the health challenges, the family has also dealt with painful surgeries. In the fall, they will travel to the University of Wisconsin in Madison for a fourth surgery to redistribute tissue to half of Kelley’s face, in the areas that are wasting away. Dr. John Siebert will transfer fat to half of her nose and under her eye, which has turned a greenish-black color due to tissue loss.
Each surgery allows Kelley’s face to become more symmetrical, after the healing process. Kelley is getting used to the black eyes and bruises that take several weeks to go away. Even though she says her friends tell her they don’t notice her facial differences, she does and she wants to make it a little bit better.
She considers the surgeries less cosmetic, more empowering. Kelley has many goals and one of them is to become a public speaker. Already she has spoken to several classes of elementary school children, including those the same age she was when the disease first made its mark on her face.
At Christa McAuliffe Elementary School in Greeley Kelley told third graders all about her childhood and why words can never escape the memory.
“I thought I was ugly. It was mainly just my face that really bothered me,” she said.
The students were captured by every word and picture shared by Kelley. After listening to her story, Jasmine Colin Dunahn observed, “People think they’re cool when they bully you, I guess they like seeing you cry and get mad and frustrated. Someday I might grow up to be as brave as she is.”
Someday is now for Kelley Sperry. She is attending summer school at Windsor High School to finish her senior year. Her parents had to pull her out of school during the spring semester because of four extended hospital stays. She hopes to earn her degree within a couple of months.
She continues to work at the Red Robin restaurant in Loveland and has several long term goals. Besides public speaking, she would like to one day work in the mental health field, perhaps as a counselor or psychologist.
This summer, the Sperry family will host the fifth annual Romberg Retreat for other families touched by this disease. In addition, Kelley will be attending the Angel Faces retreat (www.angelfacesretreat.org) in California. It is a nonprofit devoted to helping adolescent girls with facial disfigurement reach their full potential.
Every September, the Sperry family joins a Poker Run with Thunder Mountain, (and several firefighters who like to ride motorcycles) to raise money for young women who want to attend the Angel Faces Retreat.
Donna Sperry has written a book about their Parry Romberg experience, from a mother’s perspective. Maybe the book will give Kelley the chance to fulfill her ultimate dream, an appearance on Oprah.
If you would like to know more about Parry Romberg, we have listed several resources.
NORD: http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Parry%20Romberg%20Syndrome.
Here is the family’s Parry Romberg Foundation Web site: http://www.parryrombergfoundation.org/index.html.
Support group – The Romberg’s Connection: http://www.geocities.com/HotSprings/1018/.
Parry Romberg Resources: http://www.prsresource.com/.
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