She was all dressed up. Hair curled. Makeup applied just right.

The big night had finally arrived.

Kelley Sperry had been looking forward to this party for months, and there she finally was, celebrating the holidays with all her friends from Red Robin at Centerra in Loveland at the company’s Christmas party.

Then it hit. Her shoulder slumped forward and her hand flew backwards. She’d been through this before, so she knew what was coming. All she had time to do was get, “I’m having a seizure,” out of her mouth before she hit the ground.

The scene for her co-workers wasn’t a pleasant one. Her body shook. Her feet moved violently around in circles. Her head bobbed back and forth. And she was drooling.

When the minute-long hell Kelley had just encountered was finished, all she could concentrate on was what was happening next.

She couldn’t figure out where the black water that was dripping on her face was coming from.

As things cleared, however, she realized her eyes weren’t the only eyes clouded.

Her best friend, Jami Allison, was straddling over Kelley, rubbing Kelley’s arms and telling Kelley everything was going to be OK.

But Kelley knew better. Things were not going to be OK, and Jami’s now mascara-less eyes told that story better than Kelley could.

“This isn’t a feel-good story,” Kelley’s mother, Donna Sperry, said, “because this isn’t a feel-good time. She’s truly afraid — for the first time — about what’s going to happen to her.”

The 17-year-old Windsor High School senior is approaching a new chapter in her life, one she wishes was just a nightmare.

At 9 years old, Kelley was diagnosed with Parry-Romberg syndrome — a slow, progressive degeneration of the soft tissue in half of the face. It has caused much of the right half of her face to cave or droop and leaves her with debilitating headaches and strokes that usually come on with no warning. There is no known cure for Parry-Romberg syndrome, and no reasoning for how it progresses or when it stops.

For most of her life, Kelley has put up with stares and comments about her appearance, but she’s never let it get her down. Rather the opposite, Kelley has spoken out about Parry-Romberg, developing friendships with patients all over the world going through the same struggles. And recently, she’s begun speaking to her mother’s elementary school students at Meeker and Christa McAuliffe in Greeley about bullying.

She’s had reconstructive surgeries to attempt to make her appearance more “normal.” And last year, Kelley underwent extensive dental procedures to help with the pains in her mouth.

But in early 2008, things started to go awry. Kelley noticed she was starting to “twitch,” and a depression in her skull appeared to be getting bigger. The family feared the Parry-Romberg was beginning to spread to the brain, but a CT scan at The Children’s Hospital in Aurora didn’t show any conclusive signs of epileptic seizures, so the family was forced to wait it out.

Then, on May 24 the real problems began when Kelley experienced her first Grand mal seizure. The family was terrified.

“She started having simple seizures in January,” Kelley’s dad, Jay Sperry, said. “They had her on medications for that. The seizures were coming consistently, just never Grand mals.”



Over the next seven months, Kelley had eight Grand Mal seizures. The doctors kept upping her medication, but nothing would work.

Then a little more than one week ago, on Martin Luther King Jr.’s birthday, Kelley had two in one day. That’s when the family said enough is enough and took her to Medical Center of the Rockies in Loveland.

“I thought we’d be in the emergency room and they would send us home that night,” Donna said.

Instead, Kelley spent the next seven nights in the hospital — the longest she has ever spent in the hospital where it was not an elective procedure. Machines showed she was undergoing seizures almost continually from Monday through Saturday, but CT-scans still can’t pinpoint if the seizures are epileptic in nature or connected to Parry-Romberg syndrome, since seizures are one of the possible outcomes of the disease.

“It’s like she has a list of everything that can happen to her from Parry-Romberg’s, and she’s just going down the line checking them off,” Donna said.

But the seizures are a whole new ball game for the teenager who once put on a smiley face no matter what the problem was.

“She’s not the happy-go-lucky Kelley all the time anymore,” Donna said.

“It puts a lot of pressure on her to be that way,” Jay added.

The once strong-willed, determined, fighter that everyone turned to for their strength is now fighting her own internal challenges just to remain awake.

“It feels like the bones in my head are breaking,” said Kelley, who can recall everything that happens to her during a seizure. “I’m aware of the voices around me. It hurts if someone touches me during the seizure. I can’t breath, but I know I need to.”

Before the seizures, Kelley was on one medication for her headaches. Monday, when she left Medical Center of the Rockies, she came home with 10 medications, seven of which she takes daily and three more she takes as needed. The medications total up to 27 pills a day.

Finding the right “cocktail” was hard for doctors because some seizure medicine can trigger headaches, some headache medicine can trigger seizures. Some meds make her tired, while others make her sick. And still others can cause a stroke.

Trying to treat everything without disturbing one facet of her problems has been a complicating factor.

“That’s been the most overwhelming part,” Donna said. “It makes me sick to see her on that kind of medicine, and her making a mistake with it.”

For Kelley, every day brings with it a new stress or fear.

She worries about her brothers and how they worry about her, or how her problems have consumed her parents’ time.

She worries about her best friends, Faith Daniels and Jami, and how they put their own lives and problems on hold to help her.

“Jami was at the hospital every day with me,” Kelley said. “She stayed sometimes as late as 2 a.m. until I fell asleep. She was amazing. And Faith has been with me since the beginning. She takes me everywhere, and she’s always there when I need her.”



Kelley’s worrying nature is one of the things that Jami said drives her to be there for Kelley.

“When I was at the hospital with her, she kept saying, ‘Jami go home. I’m fine.’ But I don't like seeing people sad and upset,” Jami said. “With Kelley, I feel like there is really nothing I can do but be there for her. And I just keep thinking if I was in that position, I’d want a friend to be there for me.”

Most importantly, perhaps, is at 17, Kelley still has not been able to drive. She depends on Faith to take her to school each morning and bring her home each afternoon. She shies away from going to parties or other functions because she’s afraid she may have a seizure and her friends will have to leave early to take her home or ruin their party.

“Being a senior and not being able to drive …” she started the thought on how the seizures have impacted her the most. “I’ve never had my independence and that independence just keeps getting stretched out.”

One area for Kelley, however, that her independence remains in tack is her job at Red Robin at Centerra, where’s she worked as a hostess for about a year. Kelley’s Red Robin family does everything they can to show her how much she’s loved — regardless of the fact she’s had three seizures while at work, Jami said.

“I think Red Robin does a really good job with Kelley,” Jami said. “Everybody supports her. Everybody is close. Everybody just really cares about her. We love Kelley for who she is.”

Faith agreed that Kelley's personality is something people are drawn to. She wishes somehow there would be an answer to Kelley’s problems.

“She’s still trying to put on a good face,” Faith said. “Even though she knows she can (break down) around me. It’s sad, really frustrating that she takes all these pills and they still don’t stop it. But she still just laughs it off. I want her to go to college. I want to graduate with her. I want her to lead a stress-free life, the life of a normal teenager. I just want her to truly be happy.”

Even after suffering through a week-long seizure stay at Medical Center of the Rockies, Kelley’s only thoughts were with those who have meant the most to, and done the most for, her — Windsor High School athletic director Mark Kanagy, Windsor High School counselor Libba James, the nurses at the hospital and her two closest friends in Jami and Faith.

For Kelley, though, the little things that many take for granted are no longer a part of her daily life and it’s quickly wearing on her.

“That stupid soccer game on my Wii,” she said with a laugh. “I don’t think I will ever be able to conquer that game.”

The flickering lights and action of the gaming system have caused seizures for the teenager, as have the family’s Christmas lights.

All these stresses are making Kelley the not-so-happy-go-lucky teen everyone who knows her has become accustomed to.

She’s angry. She’s sad. But mostly, she’s confused.

With all the recent publicity surrounding the seizures of John Travolta’s son, who died after failing in the shower while suffering through a seizure, and U.S. Sen. Ted Kennedy’s seizure last week because of stress, she wants people to understand just how bad this is. And why she might be cranky, depressed or not her usual high-energy self at times.

Although Kelley hopes to graduate with her class, the Sperry family is just taking everything with a cautious approach.

“She just got out of the hospital, and until the meds are clearly working we’re taking it day by day,” Jay said.