How many times in your life have you faced a physical or emotional challenge that demanded everything could give? Kelley Sperry faces that kind of a challenge every single day. She is a young, smart, courageous, twenty-one-year-old woman. Kelley has classic good looks from her parents, but she has had to battle through multiple reconstructive surgeries since age nine so that her one side of her face does not completely waste away. Her disease is called Parry Romberg Syndrome (PRS), and it is also responsible for causing intense migraine headaches, strokes and a severe seizure disorder. Many of her teeth are loose because she does not have enough jaw bone left to hold them in place. Incredibly, Kelley maintains a contagious energy and a ridiculous sense of humor in spite of these challenges. But PRS takes its toll, and Kelley suffers daily seizures and frequent injuries as a result. I met Kelley along with her mom, Donna, last month at Noodles restaurant in Longmont, Colorado to talk about her experiences with Parry Romberg Syndrome and with uncontrolled seizures. What I learned was initially saddening, but ultimately deeply inspiring.
On good days, Kelley might suffer two or three drop seizures, but she won’t be injured. But on a bad day, she might end up in the ER with injuries, and she might even have a stroke. Kelley can also count on having severe migraine headaches on a daily basis that would put most of us in bed. A few years ago, she had to quit a job that she loved as a Certified Nursing Assistant when she realized that her seizure disorder posed a risk to her clients.
Kelley’s challenge now is to work with her family to figure out some ideas about how she might become a bit more independent. Everyone in the family is desperate to help, and Kelley is doing everything she possibly can—but it is really tough when her seizures just won’t stop. Kelley’s father, Jay, works as a paramedic with the fire department, and Donna works when she can as a substitute teacher when Jay is at home. Her two brothers also live nearby, and they spend their time either working or studying full time. Kelley also has a sister who just served for five years in the military, including one year in Iraq. The Sperrys always have a family member or a friend at home, because Kelley now has so many seizures that it is dangerous for her to be at home by herself.
These circumstances have not drowned Kelley’s sense of humor, although it understandably takes on a sarcastic tone at times. After I learned that it is dangerous for Kelley to be alone at home, she quipped to me, “I am probably the only twenty-one-year-old who has to have a babysitter at all times.” Kelley also laughs when she explains that she has now gone down four times at the same Wal-Mart, which she calls the “wicked” Wal-Mart. Donna says that the family now avoids that store, and that they drive a bit further to a “less possessed seizure-causing” store. Clearly the seizures are nothing to laugh about, but Kelley and her mom are able to see a bit of silliness in the small details, and they are able to laugh about them.
Donna describes family outings as “always interesting,” and says that she often has to convince people that 911 is not needed when Kelley seizes. She also remembers one night when Kelley came back from a date: “The poor guy frantically banged on our front door as Kelley was having a seizure in the driveway.” When Kelley is out, she and Jay usually spend the night at home glued to their phones, pacing and biting their nails.
Donna has to gather her courage before describing, in detail, how Kelley has been “pinned” in terrible situations. Kelley has fallen between the bed and the wall, and she has crashed to the floor in-between the toilet and the bathtub. In January, Kelley fell to the concrete driveway during a seizure, but her foot remained stuck painfully underneath the front seat until paramedics arrived to help lift her into the ambulance. Donna frequently calls 911 for help after falls on the stairs, head injuries, and leg injuries. “I think it’s hard to understand what it’s like to hear a thump in the house,” Donna says. “It’s not just a thump in the house—you don’t know what you’ll find in the next ten seconds.” Donna explains that “Seizures leave her body sore, bruised and exhausted.”
Despite all of these challenges, there are some small victories and even some big victories. A few weeks ago, Kelley and Donna went out shopping together, and for the first time in a long time, they split up for a while. Donna was terrified the whole time, and Kelley was a bit shy to tell the story because she felt like it was a non-event. For my part, I wanted to kick Kelley for not seeing this as a huge deal. But, to be fair, Kelley has had some very exciting news during the past couple of months, and that may be why this success story did not factor quite so much onto her radar.
Kelley is really excited right now because she has a new seizure response dog, a golden retriever named Kobi. He was made possible thanks to help from her family and thanks to support from Julie and Doug Hutchison and a grant from the Chelsea Hutchison Foundation (CHF). In 2009, Julie and Doug lost their daughter, Chelsea, to a seizure. They have worked tirelessly ever since to help other families living with epilepsy so that they will have all the support that they need. And Kelley cannot say enough good things about Julie. “Julie gets me,” she explains. “She gets my mom. Julie understands my situation.” CHF recently helped Kelley again by donating a cutting edge Sleep Alert Monitor (SAMi) device, to help monitor Kelley’s sleep patterns.
And on January 19, 2013, Kobi arrived at Denver International Airport. He flew in with his trainer, Rebecca Yorkston, a director with Domesti Pups in Lincoln, Nebraska. STW readers will remember Rebecca from last November, when she shared her own remarkable story. Rebecca is no stranger to seizures herself, and when she arrived with Kobi, there was an instant connection between Kobi and Kelley. And after five months on the job, Kobi has already provided a tremendous amount of support. In one case, he even activated the Sperrys’ household alarm system to let the family know about one of Kelley’s seizures. Kobi will continue to play a big role in reducing Kelley’s stress levels and in providing her with an added safety net. Not to mention, he will always be there as a loyal companion. It seems an unlikely coincidence that Kelley went for an entire week without seizures after Kobi arrived.
Doctors and Treatment
There is virtually no research funding for Parry Romberg Syndrome, and there is not a great deal of community support either. Kelley explains that one of her best friends also has PRS, but she lives in Nebraska. It is not possible to connect very often. And because there are no treatments, the only recourse for patients is to undergo multiple painful reconstructive plastic surgeries. Kelley has worked closely with a plastic surgeon in Wisconsin, and the Sperry family credits Kelley’s surgeon to a large extent with saving her face.
Tips Tricks and Advice
Kelley’s favorite advice comes from her grandmother: “Get up every day, get dressed and put your makeup on.” Kelley has discovered that it is extremely important to get out as much as possible to enjoy the day. Even though she needs regular naps, and even though she has to take more than 20 pills a day to keep her seizures at bay, Kelley finds her happiness in simply getting out.
Another one of her great strengths in keeping the upper hand over seizures is her sense of humor. At one point during our lunch, Kelley pointed out that there was a man a couple of tables down who had set up camp with what must have been at least three full file boxes of paperwork spread out over so many tables. He also had his laptop computer, backpack and a ton of other junk too. We shared a lot of laughs speculating about what might have been going on there. Kelley seems to forget the challenges of PRS during these moments.
Kelley’s story highlights the personal challenges of Parry Romberg Syndrome as well as the stresses and uncertainties that come with uncontrolled seizures. When she tells her own story, Kelley emphasizes the idea that there is an amazing team backing her up every day: Julie and Doug, Rebecca, Kobi, her friends and especially her family. But when other people tell her story, the emphasis is pretty darn simple: Kelley Sperry is remarkably gifted. Donna states simply that “Kelley is a survivor.” Kelley knows how to face challenges that most of us can only imagine.