Kaylie Hogue was a high school English teacher who loved her job, her students, co-workers and the theater. She taught three years at Martin County West, and just as she finished cleaning and emptying out her classroom, that evening, June 5, she suffered an epileptic seizure and passed away of Sudden Unexpected Death in Epilepsy (SUDEP).
She had recently become engaged and resigned from her position at the high school to move to the Twin Cities metro area to begin a new chapter in her life with her fiance, Kurt Muhl. They were to be married Jan. 25, 2014.
For Kaylie’s family, this was nothing short of an unthinkable tragedy. Rather than let it consume them, they are finding strength in being advocates for not only Kaylie, but to bring awareness to Epilepsy.
In her memory and on the five month anniversary of her death, an epilepsy benefit was held Tuesday, Nov. 5 at Applebee’s in New Ulm. Coordinated by the Applebee’s manager and maid of honor in Kaylie’s wedding, Carissa Windschitl, 15 percent of all purchases were donated to the Epilepsy Foundation of Minnesota in memory of Kaylie.
Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. Most people with epilepsy live a full and healthy life, however epilepsy can be fatal.
Kaylie was diagnosed with epilepsy in 2010. Her first seizure happened while coming back from a trip to Chicago to see a play with her mother. The trip was a present after graduating from Minnesota State University Mankato with an education degree.
For three years Kaylie lead a normal life interrupted occasionally by seizures she would not remember or ever feel.
“The thing about epilepsy is that most people can control their seizures with medication and they live a long, happy life,” Deb explained. “With Kaylie it seemed she kept building a tolerance to the medication. The pills caused insomnia, weight gain and exhaustion and Kaylie had to keep taking more.”
According to the National Epilepsy Foundation, the leading epilepsy-related cause of death is believed to be Sudden Unexpected Death in Epilepsy, also known as SUDEP. This frightening reality is too often hidden or ignored because the topic is difficult to discuss and the cause is unknown.
Before Kaylie’s death, Deb had worried about her daughter’s health and the possibility of death during a seizure. Deb had been witness to four of Kaylie’s seizures, which lasted anywhere from 6-8 minutes, much longer than what is typical with people who have epilepsy, during which time she would stop breathing.
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While somewhat hesitant, Kaylie did agree to go to the Mayo Clinic in Rochester for tests while doctors assured Deb and Kaylie that dying from a seizure is very rare.
What Deb and her family found out later is that SUDEP is fairly common in epileptic people like Kaylie who had seizures primarily in their sleep and were hard to control with medication.
“The truth is, the chances of people dying with symptoms like Kaylie’s is about 1 in 150 of those with epilepsy that isn’t controlled well with medication,” Deb explained. “What people with epilepsy don’t realize, because they don’t know they have had a seizure, is that it is very important to take the medication at the same time each day.”
Something, Deb said, Kaylie was not always adamant about because she never felt or remembered having a seizure.
Since Kaylie’s death, Deb has been on a mission to bring awareness and raise money for research that can help stop seizures and SUDEP, find a cure and help overcome the challenges created by epilepsy.
In her journey, Deb has armed herself with knowledge by speaking with people at the Epilepsy Foundation of Minnesota and the National Epilepsy Foundation.
What’s more is that through this tragedy, Deb has been able to connect with others with similar symptoms as Kaylie, most notably the University of Minnesota’s head football coach, Jerry Kill, who also leads the charge in educating people about epilepsy. Coach Kill has suffered multiple seizures during games in his tenure as coach of the Golden Gophers.
“He said to me, “I’m sorry we couldn’t save Kaylie, but I believe that she saved my life and she will save the life of a lot of others,”” Deb recalled.
He explained to Deb that he doesn’t know why he has epilepsy, but he believes there is a reason because he is in the public eye and his condition has already helped bring awareness.
“He said together we are going to do big things,” Deb added.
On June 7, 2014, a 5K color run will be sponsored at Allison Park in Sleepy Eye to raise money for scholarships to go to students at Martin County West, Sleepy Eye Public and St. Mary’s Schools, along with the Epilepsy Foundation of Minnesota. Coach Kill has already verbally agreed to make an appearance at the event.
Page 3 of 3 - While education and awareness of epilepsy is the goal of this event, the family also wants this to be a day filled with hope, happiness and fellowship. Runners will be showered with colors of the rainbow along the race route and afterwards will have a chance to enjoy musical entertainment and a meal.
“It was my husband, Scott’s idea,” Deb explained. “The day of Kaylie’s wake there was a double rainbow and since that time people have sent us pictures of rainbows and tell us every time they see a rainbow they think of her.”
Deb also has several other events in the making that will bring awareness to Epilepsy. Her message is that people with epilepsy are really normal people living really normal lives and most of the time epilepsy is treatable with medication. But for those like Kaylie whose Epilepsy isn’t treatable with medication she wants to help find other options.
“Some really great things are coming out of this tragedy,” Deb said. “When tragedy strikes you can either roll over and let it consume you or you can embrace it and gain strength from it and make a difference. Kaylie continues to make a huge difference in the lives of many people.”