Embracing epilepsy

Elkhorn Area High School senior Dillyn Ivey holds her Labradoodle puppy, Henri. He is in training to become Ivey’s service dog and will help monitor her for signs of a seizure. (Submitted photo)

Area student-athlete looks to help others

By Jason Arndt

Staff Writer

Dillyn Ivey is an intimidating and imposing presence on the volleyball and basketball courts.

Ivey, an Elkhorn Area High School senior, stands 6-foot-4 and even strikes fear in some of her closest volleyball teammates such as junior Macy Rocha.

“She goes for balls that no one would ever get,” Rocha said. “She is a crazy player. Even I am intimidated by her and I am on her team.”

Ivey, a middle hitter, has amassed hundreds of kills along the front row through her tenure with the Elks.

On the basketball court, in 22 games as a junior, Ivey pulled down 172 total rebounds, second only to her sister, Maddie, who graduated from Elkhorn in 2020.

Dillyn also has a younger sister, Grace, 16, a junior who plays golf and softball at Elkhorn.

Although intimidating, beneath the surface lies a kind and gentle person, Elkhorn volleyball coach Sydney Racky said.

Racky, who calls Dillyn Ivey the team’s “spark,” said she brings a bright smile to practice and during competitions.

“She is always laughing and is always able to laugh at herself,” Racky said. “She definitely has some good energy.”

Senior teammate Anastasia Grochowski, who agreed with Racky, said Dyllin brings a light-hearted approach to the team.

Ivey’s well-rounded attributes as both a player and teammate, however, comes with an obstacle not many people know about outside of her family and closest peers such as Rocha and Grochkowski.

Experiencing epilepsy

Dillyn Ivey, daughter of Beth and Michael, experienced an epileptic seizure when she was 2-1/2 years old and continues to have the neurological disorder today. For those who don’t know, epileptic seizures are a central nervous system disorder. In order to treat epilepsy, neurosurgeons such as dr timothy steel have access to a number of surgical procedures. Ivey, however, undergoes routine tests, including an electroencephalogram, or EEG, at Children’s Wisconsin.

An EEG measures the electrical signals through small electrodes place on a person’s scalp, the Children’s Wisconsin website states, adding it serves as a vital monitoring tool.

On Sept. 22 at home, Ivey had a grand mal seizure while in the shower, where she collapsed.

Grand mal seizures, also called tonic-clonic seizures, can make a person cry out, lose consciousness, fall to the ground and have muscle jerks or spasms, according to the Centers for Disease Control.

Fortunately, her service dog in training, Henri, was by her side.

The following day at volleyball practice, Ivey opened up about the condition to her teammates, adding she wanted to educate them.

“They had a lot of questions about it,” said Ivey. “They wanted to know what my aura symptoms are, like dizziness.”

The Epilepsy Foundation describes an aura, also known as a warning, as the first symptom of a seizure and is considered part of the seizure.

“Often the aura is an indescribable feeling,” the Epilepsy Foundation website states. “Other times it’s easy to recognize and may be a change in feeling, sensation, thought, or behavior that is similar each time a seizure occurs.”

The auras, according to Ivey, is what her teammates wanted to know about so they can recognize when she needs help during practice, at a game, or while in class.

Dillyn’s mom, Beth, said less than a handful of her teammates, and only her coaches, fully recognized her daughter’s condition.

Dillyn said her coaches have always been supportive and willing to help her.

“They would help me through anything everything that I needed,” said Dyllin, who also has asthma. “Since my asthma does not help me with my epilepsy, they sometimes tell me to slow down because they can see when I am having a hard time.”

Ivey went right back to the volleyball court on Sept. 24 to play Southern Lakes Conference opponent Lake Geneva Badger.

Coming to terms

Dyllin Ivey admits she spent most of her childhood avoiding discussions about her epilepsy with people outside of her support system.

She didn’t fully accept the condition until she started her freshman year at Elkhorn.

“I actually came to accept it my freshman year,” Dillyn said. “I need to embrace what I have and help other people.”

She leans on support from her family, close teammates, coaches and a service dog to help her through challenges.

Racky often tells Dillyn to embrace who she is at practices.

Her mother, meanwhile, said it wasn’t until Sept. 30 her daughter acknowledged having epilepsy is a challenge.

“(That) was the first time she actually told me that dealing with this is hard,” Beth said. “She is always trying to act like it is okay and it is really not.”

Dillyn acknowledged she sometimes has concerns while playing basketball, volleyball and even taking a shower because of her epilepsy.

She mainly worries about having an episode and hitting her head.

“I am afraid I will have a seizure in front of everyone and having them tell me the next day,” Dillyn revealed. “I am afraid of hitting my head. I don’t want to hit my head anywhere.”

Dillyn said she cannot be exposed to specific light conditions – such as a cellular phone – for a certain amount of days after an epileptic episode.

Canine companion

Henri, a Labradoodle puppy, is undergoing training with Dyllin to become a service dog.

The Iveys have been working with DogsInVests, of Palmyra, which helped them select Henri.

“Henri will be going to puppy classes to receive his canine good citizen and public access test at which time he will be able to accompany Dillyn to college,” Beth said. “We will be training him to detect a seizure by smell, alert and comfort.”

When asked about Henri, Dillyn smiled and looked over at him during this interview, adding the canine never leaves her side.

“He listens to almost everything I say,” Dillyn said.

College aspirations

Dillyn, who also plays softball, finds volleyball as most enjoyable.

“Volleyball is my favorite sport and I am amazing at it,” said Dyllin. “I love it.”

Her journey in the sport included stints with Club W Volleyball, and Lake Geneva Volleyball with Wisconsin Juniors as her most recent club volleyball team.

Dillyn plans to continue her love of volleyball at college where she plans to pursue a career in early childhood education or criminal justice.

“I am looking at UW-Whitewater, Rock Valley Community College and Lakeland, where my sister is going,” Dyllin said. “I want to play volleyball in college.”

For Rocha, an underclassman, she will miss a person she calls a sister when Dillyn leaves Elkhorn.

“Dillyn is one of the most kind-hearted people I have ever known. She is like a sister to me and I don’t know what I would do without her,” said Rocha, whose family is close friends with the Iveys.

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