Waterloo teen faces incurable disease with help from UI Health Care
Facing rare Batten disease, Waterloo teen Jaxton receives lifesaving, multidisciplinary care from specialists at UI Health Care Stead Family Children’s Hospital.
Before he turned 5, Jaxton Engstrom of Waterloo began sitting too close to the TV, tripping over objects, and struggling in preschool.
At first, doctors thought Jaxton might have a retinal disorder. But further testing at University of Iowa Health Care Stead Family Children’s Hospital revealed something far more serious: Batten disease, a rare and terminal neurological disorder.
“He was completely healthy and normal,” recalls his father, Brett Engstrom. “We didn’t suspect anything was wrong.”
By 2012, Jaxton’s vision had declined rapidly. He learned braille and began using a cane, but just two years later, he collapsed during a seizure while waiting for the school bus. That moment led to additional genetic testing at Stead Family Children’s Hospital, and just one week before his seventh birthday, the family received the devastating diagnosis of Batten disease.
Living with a rare condition
Batten disease is a rare genetic disorder where waste builds up inside brain cells, causing them to stop functioning properly. Over time, this leads to vision loss, seizures and premature death. Only about three in every 100,000 babies born in the U.S. are affected, and most states have just one or two cases.
“It’s one of the worst diseases you can imagine,” Brett Engstrom says. “It’s your brain dying one cell at a time. Sometimes the losses are gradual, sometimes sudden. One day, he went from speaking in full sentences to just a few words.”
Jaxton’s care team grew to include experts across many specialties; pulmonology, neurology, cardiology, gastroenterology, psychiatry, and more. Since there is no cure, the team focuses on managing symptoms and improving his quality of life, including controlling seizures with different medications.
Over the years, Jaxton has lost many abilities, like walking, talking, and eating by mouth, but his parents say he has never lost his spirit.
“It’s like Alzheimer’s in a child,” explains his mother, Tina Engstrom. “People ask if there’s a treatment, and there isn’t. It’s hard to explain a diagnosis like this.”
A life-threatening emergency
In January 2023, Jaxton received a gastrostomy tube (G-tube) for nutrition and medication. Months later, he faced a life-threatening complication. After developing severe sepsis, he was rushed from a local hospital to Iowa City.
“The mortality rate was around 80 percent,” Brett Engstrom recalls. “We wanted to give him every chance.”
Storms prevented a helicopter transfer, so Jaxton was stabilized locally for an ambulance ride. When he arrived at Stead Family Children’s Hospital, dozens of specialists assembled. For weeks, multiple teams collaborated around the clock, performing surgeries, closing extensive wounds, and treating necrotizing fasciitis, a rare “flesh-eating” infection.
“The fact that he survived was extraordinary,” Brett Engstrom says. “The doctors’ urgency, skill, and compassion were unbelievable. It truly was all-hands on deck.”
After 99 days in the hospital, Jaxton was able to go home.
A journey of courage
For the Engstroms, the experience underscored Stead Family Children’s Hospital’s expertise, but also its humanity.
“The staff became more than caregivers,” Brett Engstrom says. “They were our lifeline. Every morning, we joined rounds, and every question was answered with patience and empathy. We always felt heard.”
Now 18, Jaxton is a high school senior. Though nonverbal and in a wheelchair, he enjoys music, the sounds of boats and frogs, and visits from friends — including Waterloo West offensive tackle and future Hawkeye, Carson Nielsen.
It was Carson’s mom who encouraged the Engstroms to nominate Jaxton as a Kid Captain.
“I didn’t want to take away from anyone else,” Tina Engstrom admits, “but she reminded us: Jaxton can feel it, he can hear it, and his story deserves to be told.”
To share that story, the family created a Facebook page, Jaxton’s Journey, where they raise awareness about Batten disease and post photos — including one of a friend’s supportive license plate, “WAV4JAX,” a nod to the famed Hawkeye Wave.
“Jaxton’s journey is one of unimaginable strength and resilience,” Brett Engstrom says. “He has endured seizures, the loss of sight and mobility, and countless hospital stays. Yet through it all, he radiates love, warmth, and a smile that has the power to heal even the heaviest hearts.”
Photos from Kids Day 2025
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