Jeremy Gierke was in high school when the first symptom surfaced.
He remembers the date: Oct. 24, 2000.
Back then, Gierke was a 17-year-old high school sophomore, who lived in Fremont. He’d been sick for a few days and was at home on his computer, trying to catch up on schoolwork.
“I blinked and couldn’t see,” he said, comparing it to looking through muddy water.
At first, Gierke’s mom, Barb, thought he was having a migraine headache.
A CT scan later showed what looked like an inoperable brain tumor.
But more tests revealed lesions that appear and disappear in random spots on his brain, leaving damage behind.
For the last 18 years, Gierke has struggled with an autoimmune disease that has baffled doctors, who haven’t been able to determine what it is or how he got it. His immune system attacks his brain as if it were a threat to his body.
He has years of pain and debilitation with no answers for an “invisible” disease that doesn’t make him look sick
It’s been very disheartening.
And while some experts believe Gierke’s brain has been compensating for what he’s lost, he and his family pray for a diagnosis so doctors can pinpoint a treatment and a cure.
In the meantime, the young husband and father looks to the future and his dreams, leaning on his faith and family.
Gierke — now 34 years old — has spent years battling health issues.
He suffered chronic sinus and ear infections as a baby. He’s had migraine headaches since first grade.
In the past 18 years, Gierke has battled extreme fatigue, horrible headaches, nausea and vertigo.
He has had three documented strokes, which have robbed him of precious musical abilities. He’s fallen and gotten hurt, but family members say he gets right back up. It takes him longer to do things and he can’t do things he’d like to do.
Doctors have prescribed many different drugs and experimental treatments trying to help him.
“I have been to Mayo Clinic, three times, had three brain surgeries,” Gierke said. “I’ve had chemotherapy, 11 spinal taps and close to 150 MRIs.”
For the last 12 years, he’s had intravenous immunoglobulin therapy for five hours every month. He has steroid treatment, too, and speech, occupational and physical therapy.
In 2010, Gierke went to the National Institute of Health in Bethesda, Maryland, for three weeks as part of an undiagnosed disease research program.
Then in 2016, Gierke emailed the NIH, saying he had some blood from his second daughter’s umbilical cord. He’d heard of cases where cord blood had been used to cure diseases for relatives of an infant.
He got a reply from the NIH, saying he’d been recorded as being deceased.
“They thought I was dead so they’d stopping working on my case,” he said. “So there was five years of not researching me.”
The misinformation could have been the result of data inputted into a new computer system three years earlier.
In October 2017, the NIH brought Gierke back for three days of testing — still with no conclusions about the disease.
“They’ve pretty much decided that we’ll never know how I got it or what it is,” Gierke said.
But Gierke would learn that he is doing better than he was years ago.
“One of the doctors says my brain has compensated for things I’ve lost,” he said.
While some neuropathways have been destroyed, his brain has started to make others.
In 2010, Gierke was suffering from significant side effects — like having vertigo for a month — because his brain wasn’t making those pathways.
Gierke said, however, his brain is starting to rewire itself around areas of dead tissue caused by the lesions.
He doesn’t have the horrible headaches and vertigo like he used to, although he still has extreme fatigue.
Now, the symptoms Gierke has seem to be related more to management and side effects of medications he takes, his wife, Mindy said.
Gierke’s brain disease still doesn’t have a name, but in 2013 a Mayo Clinic doctor did put together some medical terms to try to describe the disease: steroid-responsive angiocentric leukoencephalopathy.
“So what I have is inflammation of the white matter in my brain that responds to steroids,” Gierke said.
Despite his health challenges, Gierke has goals and dreams for the future.
“There’s things I want to do in my life, things I want to accomplish,” he said.
He’s dreamed of going to medical school. He’d like to get more copyrights on songs he’s written and patents on things he’s invented.
Gierke would like to start playing the drums and piano again.
“It’s discouraging to know you were good and now you’re not very good,” he said, “but I can still do it to some extent and that’s a blessing.”
Four students from Arlington High School’s Future Business Leaders of America (FBLA) chapter won awards in the University of Nebraska at Lincoln’s American Business Competition on Feb. 14.
At the American Business Competition at UNL, students are invited to put their business skills to the test in competitive events that judge students on everything from job interviews to personal finance.
Rachel Kraemer finished in second place in the competition’s job interview event. Participants were required to prepare a resume and cover letter prior to the event and participate in a job interview. Kraemer was chosen from a pool of 42 participants to move onto the final round and ultimately nabbed her second-place finish, according to Arlington Business teacher and FBLA adviser Shawna Koger.
Kirk Rangel finished in first place in a written test on FBLA principles and procedures. Grant Bracht and Emily Kraemer ranked third and fourth, respectively, in the management decision making test, and Bracht also place fourth in personal finance.
Ten Arlington students from grades 9 through 12 attended the event, and several placed in the top 15 of their respective competitions.
Students were also given tours of UNL’s new College of Business Administration building on campus.
Arlington’s success at UNL is a follow-up to a successful showing at the University of Nebraska at Omaha’s competition in January, where the school finished in first place during the team competition for the second straight year.
Koger says that the UNL competition provided a positive precursor to the students’ main event—the Nebraska FBLA state championship, which will be held in Omaha between April 5 and 7.
“It’s a good place for them to see where their skills are, and they can figure out what they need to work on,” Koger said. “It makes them feel like what they’re doing to study is paying off and they’ll continue to work hard until we get to our state leadership conference in April.”
Koger said that Arlington will have 49 students going to compete at the state competition. In addition to competing, those students will hear keynote speakers and attend seminar presentations.
“Our goal is to place in the top three because students placing in the top three will go to the national competition which is in Baltimore, Maryland,” Koger said. “Right now they’re busy writing reports and doing online testing, computer events to prepare for our state conference.”
Arlington had nine students qualify for last year’s national competition.
Next week, the school goes on to compete at Midland University for its final competition before the state championships.
Jeremy and Mindy Gierke have seen good things come even through a tough situation.
For the last 18 years, Gierke has struggled with an autoimmune disease that has baffled doctors, who haven’t been able to determine what it is or how he got it.
But the former Fremonters, who soon will celebrate their fifth wedding anniversary, are thankful for the blessings they’ve experienced.
The two married on April 13, 2013.
They met while both working at Applied Underwriters.
“He charmed me,” Mindy said.
Gierke would bring in muffins or cupcakes baked by women from Good Shepherd Lutheran Church in Fremont, where his dad, the Rev. Tiim Gierke, was a pastor for 35 years.
Mindy liked that Jeremy was a church-goer and a Christian. Since she’s deaf in one ear and he sometimes has speech issues, they’d have to stop and take time to talk.
Mindy had a brain tumor when she was young.
“Mine was a whole different experience than what he’s been through, but it was something in common,” she said.
The two learned that he and Mindy, who also was from Fremont, lived just five houses apart from each other on 19th Street when they were young. Mindy was 6 years old when she moved from Fremont.
Their relationship blossomed.
“I loved him and my daughter (Davina Whitaker) loved him. It was just right,” she said.
Mindy became pregnant with the couple’s daughter, Miah, soon after the couple married, a pleasant surprise since Jeremy had been told it was unlikely he’d be able to have children.
Miah’s name would come the prophet Jeremiah and from a Scripture in the Old Testament book of the Bible that bears his name: “‘For I know the plans I have for you,’ says the Lord of hosts, ‘Plans to prosper and not harm you, plans to give you hope and a future,’” which is what Jeremy considers his life verse.
Miah Hope was born premature on Dec. 14, 2013, and came home on New Year’s Day in 2014. The couple has since had another daughter, Cadence.
Jeremy is busy as a stay-at-home dad to Davina, 10, Miah, 4, and Cadence, 2.
“I enjoy that a lot,” he said. “I know more about dolls and tea parties and changing diapers than I want to, but it’s a blessing to be home with them.”
For two days a week while Miah is at preschool and Cadence is at daycare, he has therapy and doctors’ appointments and can relax at home.
When he has energy, Gierke cooks, cleans, does laundry and vacuums.
“That’s what I call life,” he said.
He also appreciates the blessing of people from Good Shepherd Lutheran Church who’ve said they still pray for him every day.
Mindy also cites trust in the Lord, and seeing him at work, and support from family that’s provided encouragement, adding this about God:
“It’s not easy, but you’ve got to know that he’s the one in control when we don’t know what he’s doing and can’t see the plan.”