To look at Jeremy Gierke, you wouldn’t think anything was wrong.
A thin young man with neatly cut hair and a crisp shirt and tie, he appears healthy and fit.
But true to the adage, appearances really are deceiving in Gierke’s case.
For the past nine years, the son of the Rev. Timothy and Barb Gierke of Fremont has struggled with an autoimmune disease that has baffled doctors across the country. With this disease, Jeremy’s immune system attacks his brain as if it were a threat to his body. Lesions appear and disappear in random spots on his brain.
“Depending on where they show up, it changes my symptoms,” he said.
Symptoms can include extreme fatigue, headaches, nausea, light-headedness and forgetfulness. What’s more, a hemorrhage that occurred during a biopsy in 2006 left the now 26-year-old man with stroke-like symptoms on the left side of his body. He sometimes slurs his words. He’s lost fine motor skills — and thus precious musical abilities. The young man who once masterfully played several musical instruments now struggles to play only a couple.
His dreams of attending an out-of-state college, having a medical career in the U.S. Air Force and reaching new levels with his music have been replaced by years of painful tests and procedures — including seven spinal taps — and mounds of medical bills.
To help Jeremy, parishioners at Good Shepherd Lutheran Church in Fremont are hosting a benefit dinner from 11 a.m. to 2 p.m. Sunday in the church’s Community Life Center. Suggested donation is $7 for adults and $3.50 for children. There will be a silent auction and entertainment by the Lonny Lynn Orchestra. The musical group will play from noon to 4 p.m.
The public is invited.
Thrivent Financial for Lutherans will provide supplemental funds and control disbursement of the money, which will be used strictly for medical expenses.
Jeremy was a high school sophomore when symptoms emerged on Oct. 24, 2000. Working on a computer, he was trying to catch up on homework after having been sick a few days.
“I remember blinking and when I opened my eyes I couldn’t really see clearly,” he said.
Then just 17 years old, he didn’t tell anyone at first. He figured his eyes were simply tired, but the symptom continued. It was like looking through muddy water. So he mentioned it to his mother. They stopped by a local doctor’s office.
Since he was baby, Jeremy suffered chronic sinus and ear infections. He’d had migraine headaches since first grade and the doctor suspected this might be the problem, but a hospital’s CT scan revealed what appeared to be an inoperable tumor in the center of Jeremy’s brain.
An MRI at an Omaha hospital the next day showed three more abnormalities. A brain surgeon there said the problem appeared to be an infectious process instead of cancer.
“How long will it take you to figure this out?” Barb asked.
“This will take some time,” he said.
Nine years and numerous doctors and tests later, experts have not been able to determine a cause, diagnosis or cure. Doctors have tried many different drugs and experimental treatments, trying to halt the disease and relieve his symptoms.
“Since they don’t know what the disease is, doctors can only guess at how to best treat it,” Barb said.
Throughout the years, he’s taken multiple pills daily to help minimize symptoms and keep brain inflammation and lesions under control. He took oral steroids for several years to help control the disease and its side effects. He no longer takes those, but they still have taken a toll on his bones.
“They told me I have the bones of a 65-year-old,” Jeremy said.
He’s now also taking a pill that’s a low dose of chemotherapy. His doctor has asked him to consider going on chemotherapy — monthly, five-hour treatments for six months — something that will make him sicker and carries other side effects.
“It’s a tough choice,” he said. “It’s a lot to think about.”
In the meantime, he averages five doctor’s appointments a month. He has MRIs every three to six months and blood work every month as doctors monitor the situation.
“The lesions come and disappear and ... show up somewhere else and disappear. Every place there’s been a lesion, there’s been damage,” he said.
Which is why it’s vital that doctors monitor his condition.
Barb added every doctor who’s examined Jeremy has expected to see a bed-ridden invalid or someone in a wheelchair considering how his brain looks on the scans.
That, she said, is “a God thing.”
There have been many difficult times. One of the hardest was the day the music died, when Jeremy hemorrhaged during a brain biopsy. Whereas he once played guitar, violin, piano — and was an trophy winning drummer on the state level — he lost the fine motor skills necessary to play the guitar. Working diligently with physical therapists he is again able to play drums and piano, but not to his own satisfaction or pre-surgery level, his mother said.
It’s been difficult when, throughout the years, he has had to pace himself and fellow students or co-workers haven’t understood because he doesn’t look sick.
The family also has faced many “scares” with Jeremy. Barb said specialists suspect Jeremy’s condition might not be terminal, but doctors have not been able to provide a prognosis of how the disease will play out.
“Will he get better? Will he get worse? ... Will it shorten his life? ... Living with the situation on a daily basis is like inching down a very dark corridor without light switches, wondering what lurks ahead,” Barb said.
The Gierkes have faced what many parents consider a worst-case scenario.
Barb remembers one night when she sat by Jeremy’s hospital bed. As she cried, she prayed and had what she calls a wrestling match with God.
“I got to the point, where I said, ‘OK, if it’s your will that my son not live, I give him back to you, but if that happens, please give me what I need to be able to cope with that.’”
His father expressed similar sentiments.
“You have to acknowledge that our kids don’t belong to us. They’re on loan from God and we have to take care of them and we have to be ready to give them back,” Timothy Gierke said. “And we’re not in charge of that.”
Throughout the entire situation, family members have watched their faith grow.
“Our family has been forced to take hold of our faith in ways we never have before,” Barb said. “... From many comments we have received over the years, we know that Jeremy’s faith and his determination not to give up has been a witness to many.”
Good things have happened. Jeremy graduated from Midland Lutheran College in 2006. He and his wife, Jennifer, married in 2008. He works at Applied Underwriters in Omaha, authorizing medical treatments for procedures such as MRIs and CT scans.
Jeremy said he’s grateful to his wife, parents, sister and the Good Shepherd congregation. He’s thankful for his job.
“God has blessed me with the job I have because I work with eight nurses, so they’re lenient about giving me time to go to doctors appointments and they’re super caring. I couldn’t get through this without them,” Jeremy said.
Someday, Jeremy plans to write a book about his experiences. In the meantime, he trusts God.
“I’m just waiting to see what God has in store,” he said.
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