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Falling down the rabbit hole: Teen talks about living with epilepsy

After her first seizure, which occurred in school at the age of 15, Tehya Mrotek had one question for her doctors and nurses: Am I going to die? "I didn't know what epilepsy was," she said.

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Tehya Mrotek, a senior at Stewartville High School, was diagnosed with epilepsy when she was 15. Mrotek is an ambassador for this year’s Stroll for Epilepsy.

After her first seizure, which occurred in school at the age of 15, Tehya Mrotek had one question for her doctors and nurses: Am I going to die?

"I didn't know what epilepsy was," she said.

But along with her parents, Tamra and Curt, she has learned a lot about the challenges of living with the disease.

"With medication and being cautious in my activities, I am able to do most of what I want to do," she added.

Mrotek is ambassador for this year's Stroll for Epilepsy , the annual walk to raise funds for people living with epilepsy. It will be Thursday at the University Center Rochester Regional Sports Center.

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An estimated 60,000 people in Minnesota have epilepsy, a neurological disorder that causes people to have recurrent seizures. In 70 percent of epilepsy cases, the cause is unknown, according to the Epilepsy Foundation of Minnesota .

"My family and friends will be joining me on the stroll, Mrotek said. "There are almost 30 of us. I named my team the Mad Hatters, because I like the movie "Alice in Wonderland."

She said she can relate to how Alice must have felt when falling down the rabbit hole. She compares it to the sensations she experiences during a tonic-clonic or grand-mal seizure.

"I have a feeling of falling and then a very painful impact. I can hear others around me trying to help. What occurs in those two to five minutes of a seizure feels like an hour to me. It's traumatizing," she said.

Mrotek's initial seizure occurred in November 2011.The next 18 months were very challenging for her and her family.

"We got very little sleep in the year and a half after the diagnosis," said her father Curt. "Tehya was afraid to fall asleep, worried about having another seizure. We took turns being with her, making sure she wouldn't get hurt during a seizure."

With daily medication and lifestyle changes, Tehya has been seizure-free for a year and a half.

"Going through this experience has certainly put things into perspective for us as a family," Curt said. "It was overwhelming when she was first diagnosed."

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He said the Stroll for Epilepsy is a time to connect with others who are going through similar circumstances.

"It's a chance to talk to people and reassure them that there is help," he said.

Tehya said that, along with the Stroll, she found community in Camp Oz, a camp for kids with epilepsy.

"I went to camp every summer for the past three years. I didn't want to leave when it was over. I liked being with people my age who could relate to what I'm going through," she said.

Tehya will be a senior at Stewartville High School this fall. She is looking forward to graduation and all the many social events in the year ahead, but noted that because of epilepsy, she may not be able to participate as fully as she would like.

"I like to dance but that can be hard because school dances go late and I usually need to get home early to get enough sleep," she said.

She also likes being creative, working on sculptures, drawing and painting.

"Painting calms me. I liked going to the Canvas and Chardonnay event where I painted Eddie, the sock monkey," she said.

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Eddie was helpful at last year's stroll when he was used to cushion someone's head during a seizure.

"My sister Mariah wrote a poem about Eddie," she said. "He's a hero."

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If you go

What: Epilepsy Foundation of Minnesota 2014 Stroll for Epilepsy

When: Thursday. Check-in at 5 p.m. Stroll starts at 6:30 p.m.

Where: UCR Regional Sports Center, 851 30th Ave. S.E.

Register: Online at www.support.epilepsyfoundationmn.org

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