Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.

Back to Main PageBack to Parent's Page

All photos and text are the property of the families represented, and may not be used without their consent.

Kelley's too busy loving life as a teen to ask 'Why me?'

By T.M. Fasano / Greeley Tribune
The Greeley Publishing Co. - P.O. Box 1690 - Greeley, CO 80632
March 24, 2005

Donna and Kelley
Donna Sperry runs her fingers through Kelley's hair as she rests on the couch. Since Kelley was diagnosed with Parry-Romberg syndrome four years ago, Donna has been relentless in her search to understand and inform others of the mysterious disease.
DARIN MCGREGOR
dmcgregor@greeleytrib.com

It's a typical Friday night at the Sperry home in Windsor.

Kelley Sperry is on her cell phone with her friends. When Kelley's off the cell phone, she's on the home phone with more friends. Kelly's brother, Jesse, and his two friends are waltzing in and out of the house like it's Grand Central Station.

The music is blaring upstairs as Kelley and her two friends get ready for the middle school dance at the Windsor Community Center. There's laughter. There are outfit changes. There's the careful procedure of applying makeup. There are more outfit changes. There's a whole lot of perfume in the air. There's even more laughter.

It's the typical scene for a teenage girl, but not everything's normal for Kelley. Kelley was born with Parry-Romberg syndrome, a rare disorder that is attacking the right side of her brain and face. Words such as “wasting or eating away” or “dissolving” can best describe what Kelley's face has gone through.

Kelley doesn't have time to ask, ‘Why me?' She's having too much fun living life as a 13-year-old eighth-grader at Windsor Middle School. She tries on multiple outfits and primps in front of the mirror with her friends putting on makeup before dances. She works out three to four times a week at a health club in town. Overcoming Parry-Romberg syndrome hasn't been easy, but Kelly has managed to seize the challenge.

“I'm happy now,” Kelley said.

She isn't about to let a rare disease come between her and the way she lives her life.

“I don't really think about it. I think about boys and my friends and what I'm going to do during the weekend,” Kelley said with a laugh.

Spoken like a true teenager who listens to rap, hip-hop and country music. Kelley is a certified baby sitter and wants the world to know that she's available to baby-sit so she can earn some money.

Last year was Kelley's first in the Windsor Re-4 School District after her father, Jay, and mother, Donna, moved Kelley and her two brothers — Dillon, 18 and Jesse, 14 — from Westminster to Windsor.

Kelley had a rough year last year in seventh grade trying to adjust to her new surroundings.

Kelley used to say she hated herself and she hated life. Not anymore, though. She's soaking up the social life with two of her best friends — Bre Graff, 14, and Megan Niblo, 13.

Bre said Kelley always makes her laugh, and Megan said she loves Kelley's personality.

“Some people are judgmental, and they call her names. She gets really hurt about it,” Bre said. “We get really mad, and we'll tell them to knock it off.”

Megan said she doesn't even see anything wrong with Kelley's face when she looks at her.

“I judge people from the inside, and not their cover,” Megan said.

Kelley is also close with Brad Nichols, a 14-year-old from Severance who plays football and likes to ride dirt bikes. Brad confronted another boy who was teasing Kelley and told him to stop it.

“He thought that making fun of her would make him cooler,” Brad said. “I told him to back off.”

Brad said he was a kid who once did the teasing.

“I used to be a pretty big bully and lost a lot of friends that way,” Brad said.

Brad also doesn't see Kelley's disease when he looks at her.

“For me, it's just another defect. It's just what makes Kelley Kelley. It's just the way God made her,” Brad said. “Kelley's my really good friend, and she's one of the more popular girls in the school.”

Entering the teen years is tough for anyone, but doing it at a new school with a rare disease makes life even more difficult. Middle-school kids are notorious for teasing and setting up cliques. Kelley had to face the stares every day she entered the school doors.

Acceptance wasn't easy that first year in Windsor. Kelley said she sat alone for the first six weeks of school.

“Nobody knew me. When I got there they were like, ‘She's going to be stupid,' ” Kelley said.

Donna, 46, said people would ask Kelley about her face last year and she would just blow them off. Rumors ran rampant about Kelley's condition. Donna, a fifth-grade teacher at Mary Blair Elementary School in Loveland, heard a comment at Walgreen's that Kelley had a brain tumor. Not true.

Kids from another school even made fun of Kelley's appearance last year on a field trip in Fort Collins. They were making faces at Kelley from the bus window.

“The teachers saw me crying, and they went over there and yelled at them,” Kelley said.

Kelley's bubbly personality takes over a room. Soon, it made other kids take notice.

“This year, I opened up to a lot more people,” Kelley said. “I know everyone, and everyone likes me, unlike last year. Friends are the things that keep me going.”

Jay, 45, said this has been a breakthrough year for Kellbell, a nickname he has for Kelley.

“Once she started getting more friends, they became friends where they'd help each other through thick and thin,” said Jay, a paramedic and firefighter in Westminster.

Windsor Middle School assistant principal Joe Ahlbrandt said Kelley has blended in well with her peers.

“Her school issues are no different than any other middle school kid's issues. I think the kids see her as another student,” Ahlbrandt said. “I think very few of them even recognize any differences. She's a very social person.”

When Donna talks about how Kelley's doing these days, there's a definite sound of relief in her voice.

By no means is Kelley a teen angel, Donna said. But she's Donna's and Jay's little angel.

“I am so thrilled to have a teenage brat,” said Donna with a smile on her face.

By T.M. Fasano / Greeley Tribune
The Greeley Publishing Co. - P.O. Box 1690 - Greeley, CO 80632

More Articles / Links / Photos:

Feel free to e-mail the Sperry family at rombergs@hotmail.com


Back to Main PageBack to Parent's Page

All photos and text are the property of the families represented, and may not be used without their consent.