Kaylin Eichner held an applause sign for the audience at her school play, but it could also be for her. Photo by Sam Arendt
Cruelly struck down by viral encephalitis, Kaylin Eichner endured four weeks in a coma, survived a brush with death and was left impaired and with a future darkened by epilepsy and seizures. Now she has taken back her life day by day with a spirit so remarkable she has been honored for her courage in taking epilepsy ‘out of the darkness.’
For the first time since she was diagnosed with epilepsy five years ago, Kaylin Eichner, a junior at Ozaukee High School in Fredonia, appeared comfortable being on stage in a school play.
She held up signs that read “applause,” “boo” and “aww” to the audience and said a few lines (with a little prompting from her parents) in “The Ever After,” a comedy that brought fairy-tale characters together in an effort to achieve reconciliation.
After each show, cast members told Kaylin she did a good job or gave her a high-five or thumbs up.
It was another milestone for the girl who has overcome incredible odds just to be alive and on stage, and for her parents, Keri and Bob of Fredonia, who have been by her side every step of the way.
In November, Kaylin received the Lila L. Marcus Achievement Award from the Epilepsy Foundation of Southeast Wisconsin. The award, which is given to a teenager who has shown courage in dealing with epilepsy, was presented during a black-tie fundraiser at the Pfister Hotel in Milwaukee. The theme was “Out of the Darkness, Into the Light for Epilepsy.”
Before a large, appreciative audience, most of whom have been touched by epilepsy in some way, Kaylin read a speech she prepared and rehearsed with her parents. Taking each letter in the word epilepsy, she described her journey in a way that brought tears to many eyes.
“E is for every day is different,” Kaylin said. “Need I say more? Some days I feel good and remember everything. Some days I feel icky. One day I had friends and one day I lost all my friends because I was ‘different.’ One day, I was an academic excellence student. Today, I’m focusing on social skills rather than academics.”
Kaylin deserves the honor, her mother said.
“She’s a good role model,” Mrs. Eichner said. “She’s not being defined by the illness, but how she deals with it. Kaylin rarely says, ‘I wish this hadn’t happened to me.’ Some kids would play the victim role. She’s accepted the fact she has seizures, and she deals with it.”
Kaylin has short-term memory loss, mood swings and seizures. She is mainstreamed in her classes this year, receiving pass/fail grades based on her effort and progress.
Her seizures have been reduced considerably and are less intense since a vagus nerve stimulator, which is like a pacemaker for the brain, was implanted near her neck a year ago. The stimulator is triggered by a magnet she wears like a bracelet on her wrist.
When she senses a seizure coming on — Kaylin described it as feeling weird and having an aura — she swipes the magnet over the stimulator to stop or lessen the seizure.
“She used to have two to three seizures a day. Now, it’s two or three a week,” her mother said.
Seizures that used to last 20 to 40 minutes are now half that long.
Her short-term memory is also getting better, her father said.
“When Kaylin has a good day, she has a great day,” he said. “The memory is there. One of the benefits of the vagus stimulator is she has many more good days. She has an incredible musical memory. She can hear a song two or three times and knows it.”
Finding a school where the staff and students accept and understand Kaylin has helped a lot, her parents said.
The family moved from Port Washington to Fredonia two years ago to provide a clean slate for Kaylin with friends who didn’t know her before the seizures.
Before the seizures, Kaylin was an A-student, active in school and community theater productions. She was starting a portfolio to be a model.
That all changed Oct. 31, 2005, when Kaylin, then 13 and a seventh-grader at Thomas Jefferson Middle School, went to the emergency room at Columbia St. Mary’s Hospital in Mequon after experiencing flu-like symptoms, severe headaches and a high fever for five days that
didn’t respond to Tylenol.
While there, Kaylin started having seizures and was transferred to Children’s Hospital of Wisconsin in Wauwatosa, where the seizures became more frequent.
Her symptoms were similar to those experienced by a Fond du Lac girl who had rabies, her parents were told. Kaylin was put into a coma to stop the seizures. When tests showed she didn’t have rabies, more tests were run and Kaylin was diagnosed with viral encephalitis.
She was in a coma for three weeks. She had an MRI on Nov. 18 and went into cardiac arrest for four minutes. She remained in a coma for another week. No one knew when, or if, she would awaken and what she would be like.
On Thanksgiving Day, her grandfather Ernest Hadler said, “Kaylin, please open your eyes.” And she did.
“Grandpa is the lifesaver because I opened my eyes to his voice,” Kaylin said.
Kaylin came home Jan. 6, 2006, after 67 days in the hospital and many prayers.
It has been a series of small steps forward and backward. Kaylin returned to middle school a few hours a day that spring. She repeated many of her classes and took some eighth-grade classes the next year. Her mother also went to school, volunteering in the office or library in case Kaylin needed her.
She tried Port Washington High School, but it didn’t work out. Ozaukee is a better fit, her parents said.
Kaylin takes medication that enhances her feelings, which can result in frustrated outbursts that she’s learning to control.
The family has learned a great deal about the disorder in five years. Kaylin and her parents try to educate people, especially classmates and teachers, about epilepsy to dispel the stigma and fear and teach people what to do when someone has a seizure.
Rarely, they said, is it necessary to call 911. There have been incidents they can now laugh about, but weren’t funny then.
Like the time Kaylin had a small seizure on an airplane and found paramedics and an ambulance waiting when the plane landed.
When Kaylin recently gave her speech to members of First Congregational Church in Port Washington, they, too, shed tears.
“They asked what they should do if Kaylin has a seizure. We told them to talk softly, rub her back and tell her to swipe her magnet. Make sure she’s safe and support her if she may fall,” Mrs. Eichner said.
Students knew what to do when Kaylin recently had a seizure in the dressing room before a play rehearsal. One girl stayed beside her and talked her through it. No one panicked.
“They did everything right. It was better than I expected,” Mrs. Eichner said.
She or her husband, sometimes both, were at all play rehearsals and productions.
“I really appreciated their support. With 35 students from fifth-graders to seniors under my control, I couldn’t provide the individual attention she thrives on,” director Jo Gray said.
“I’m really proud of how the other kids accepted Kaylin, and I’m proud of Kaylin. With her short-term memory, it was like starting over every day, but each day was a little better. There were times when glimpses of what she could do came through.”
Kaylin loves music and being on stage, and so does her father.
She and her father are in community theater productions, but choose roles they can do together. Both were spooks at the 4-H Haunted House at the Ozaukee County fairgrounds. Kaylin is active in the Waubeka 4-H Club.
Kaylin jokes about her career, but she’s thinking about her future.
“I like acting, singing and traveling. I would like to be in the military, and I have a love for animals,” Kaylin said.
“Maybe I should be a singing, patriotic tour guide who owns a dog.”