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Florida 13-year-old fighting rare illness transferred to Chicago rehab facility

Caleb Ziegelbauer got sick after a trip to a Port Charlotte beach in July. Since then, he's been treated for a presumed amoeba infection in his brain.

PORT CHARLOTTE, Fla. — Caleb Ziegelbauer's family was told his prognosis did not look good after the 13-year-old was hospitalized for a presumed brain-eating amoeba infection back in July. Now, he's off to Chicago for the next step in his recovery journey.

On July 1, Caleb took a trip with his family to the Port Charlotte Beach Park Complex, according to his mother, Jesse. Peace River, which flows along the Port Charlotte coast, is known to have brackish water, a mix of salt and freshwater.

It wasn't until a week later that the teen started experiencing headaches and hallucinations, his family said. His parents took him to the emergency room where doctors determined a brain-eating amoeba, called Naegleria fowleri, had entered his body through his nose and infected his brain, NBC2 reported.

Shortly after, the Centers for Disease Control and Prevention reported that Caleb's tests for the amoeba were inconclusive, but based on his symptoms and clinical findings, his medical team treated him as a presumed case.

Since his diagnosis, Caleb has had a tumultuous journey in the intensive care unit, requiring intubation and experiencing a seizure, according to a Gofundme page.

But he has also defied the odds in showing steady progress toward recovery. 

"39 days ago, when Jesse and Eric brought Caleb to the ER and doctors were beginning to realize it was the very worst case scenario possible, they told them they had 4 days left with their son. Tops," an Aug. 17 update read. "Four days. And today, they started to talk discharge from the hospital."

In an Aug. 24 update, the family described some of the positive changes they were seeing in the teen, including "movement at his ankles, reflexive withdrawal from ice on his cheek and tiny lip quivering when the speech therapist offered chocolate pudding on his lip, and shoulder shrugging today with therapy!"

On Wednesday afternoon, Caleb, who is currently described as "stable," took a medical flight to Shirley Ryan AbilityLab in Chicago where he will continue his treatment, Tampa-based air ambulance company Jet ICU wrote in a release. The company provided the flight and transport at no cost.

Before boarding the plane, Caleb's parents, Jesse and Eric Ziegelbauer, thanked the public for their support and the staff at Golisano Children's Hospital for going above and beyond for Caleb.

"You saved our baby," Jesse said to the hospital staff. "I could list every staff member who touched our family but we would be here forever and we have a plane to catch."

"He’s our alpha, our firstborn, our oldest of 4. He’s an amazing big brother. He’s a lover of baseball and science. He aspires to be an epidemiologist when he grows up," she said about Caleb. "He’s made of pure grit and determination and it is exactly that which we are banking on to wake him up.”

"I can't wait for him to share his story with you."

The flight departed at 1 p.m. from Tampa International Airport.

You can read the latest updates from Caleb's family and donate to help them cover medical costs here.

Naegleria fowleri infects people when water enters the body through the nose, usually while swimming in warm freshwater lakes and rivers, according to the CDC. You can't get infected with the brain-eating amoeba by drinking contaminated water.

The CDC says infections are rare but often deadly. Of 154 people infected with the amoeba between 1962 to 2021 in the U.S., only four have survived, the agency reports.

An easy preventative step you can take to prevent water from going up your nose is to wear a nose clip and encourage your kids to do the same. Learn more about lowering your chances of brain-eating amoeba infection on the CDC website.

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