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2019 Graduate: Lillia Bistrek

Tough Teen Faces Tough Disease with Good Attitude

Lillia Bistrek missed her kindergarten ball.

She had the dress and everything, but then her family found out she had a surgery scheduled that day. There was no way to reschedule.

“When we got to the hotel where we were staying, my mom said there must have been a fairy because she left a crown for me in the room,” Bistrek said. “I went to the hospital in my gown and wearing my crown.”

So this past school year when Bistrek, 18, was named homecoming queen, and she got to wear the fancy dress — and the crown — in front of everyone, it felt like life coming full circle.

“It felt like, ‘Oh, wow!’ It kind of made up for what I missed starting off school. It’s just a high school thing, but it meant a lot to me.”

Bistrek says everyone at Loy Norrix probably knows her because she has a rare disease.

But it’s just as likely that everyone knows her because she is a pole-vaulting, drumbeating, firecracker of positivity, who seems to be able to laugh at anything — even the disease that has dominated her life since she was a toddler.

It’s called eosinophilic gastroenteritis.

“Basically, I have too many white blood cells in my esophagus, stomach and duodenum, that’s what makes it so rare,” she said. “Some people may have too many eosinophils in just their stomach or just their esophagus, but mine were in all three.”

Diagnosed when she was 2, she spent the next nine and a half years on a feeding tube. The first three years, she was limited to ice, water, a special sucker and a dietary formula that was injected into the feeding tube.

“I’d steal food out of the trash. There were locks on the fridges and alarms on the cabinets,” Bistrek said.

“I’d have my siblings help steal food for me, but every time I ate something, it would mean going to the hospital.”

That made for a rough childhood. She couldn’t eat with other children at lunch, instead she’d have to sit in a room with a paraprofessional, who would feed her with a syringe. At birthday parties, if people forgot about her diet, she’d leave the room when the treats came out and go find an adult to talk to.

“It kind of sucks. Eating brings a lot of people together,” she said. “But I grew up with it.”

Eventually, the doctors began adding foods to her diet a few at a time. They’d do a biopsy to see how she reacted and if it was OK, they’d add a few more items.

Now, she can eat fruits, vegetables, potatoes, rice, quinoa, shrimp and fish. She can’t have eggs, milk, wheat, tree nuts, peanuts, oats, rye, barley, or crawfish. She still travels with an EpiPen in case she comes in contact with certain foods — sometimes just touching them or smelling them can set off her allergies or asthma.

Bistrek’s disease affected more than just what she could or couldn’t eat. The feeding tube she had until middle school meant no contact sports. The tube sometimes ruptured just from rough housing with friends. Her mother would have to remove the tube and push a new one into her stomach. “It was the worst pain,” she said. “I’d go through surgery over having that done any time.”

Today, the feeding tube is gone, but the scar remains, a deep indentation on her stomach. But true to form, it’s not the scar that defines her — it’s her response to it.

Bistrek pulls up her shirt to show off her bellybutton, which she got pierced the summer before her senior year.

“You’re a girl and when you wear a bathing suit, people stare (at the feeding tube scar) and say, ‘Oh my gosh, what happened?’ I thought, why not put something sparkly next to something dull?”

Bistrek danced ballet until the tube was removed. But, when she had the chance to play sports in high school, she dumped ballet for volleyball and then track, where she competed in pole vault, long jump and the 200 meter.

Coach Ted Duckett was one of the most influential people in Bistrek’s high school experience. Not just because he was a great coach, but because he was an adult she could turn to for advice about anything.

“I’ve held true to what I believe in, and I want to wait to do everything. It’s been hard,” she said. “I’d go to him and say, ‘Everybody else is doing this. Everybody is drinking and smoking and having sex.’ He’d say, ‘What? Do you want to be the fool?’ He always has some little life lesson for you.”

Also influential has been band director Aaron Mirakovitz, who has been at Loy Norrix for two years. Mirakovitz calls Bistrek “a great musician, natural leader, and empathetic peer.” “He’s taught me discipline for sure,” she said.

“He’s taught me that hard work and practice will get the job done. Well, perfect practice — not practice. You have to have perfect practice. If not, you go back and do it again, and go back and do it again. He’s direct and honest. He wants what’s best for the band as a whole and he wants to make the band program better, which he has.”

She performs with marching band, pep band and concert band. “My favorite is marching band. I love doing choreography with the band. I like things to be precise,” she said. “But, I love any kind of music. I listen to songs from Iraq, Egypt, Cuba. It doesn’t matter. If it’s moving, you can tell it moves other people.”

The other person who has made a difference has been her mom, Laura Felton-Zerafa. Her father is Tolan Bistrek.

“My mom has always been there for me,” she said. “She hates it when I say this, but she’s literally my best friend. You get to make a little speech for homecoming. My mom died because I gave her a shout out. She says, ‘I’m your mother. I’m not your friend.’

“But, my whole life, she was the one I’d wake up to after surgery. I love her so much.”

Bistrek plans to enroll in Kalamazoo Valley Community College in the fall, with hopes to continue her studies in occupational therapy at Western Michigan University.

She wants to work with patients in the hospital — inspired by all the time she spent in the hospital, surrounded by medical caregivers.

“Everyone has a story. There is always going to be someone who has it worse than you. I’ve always thought I can’t sit here and complain about my life and how I can’t eat this or that and have everyone feel bad for me. You don’t want to be that person. You want to be the person who has a good attitude about things.”

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