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Florida teen with rare brain-eating amoeba flown from Tampa to Chicago facility

Caleb Ziegelbauer, 13, was playing in the water at the beach when his parents say he contracted a rare Naegleria fowleri infection.
Eric and Jesse Ziegelbauer talk to reporters after their son Caleb was moved from an ambulance to an airplane, pictured in the background, at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. The family is flying to Chicago so the 13-year-old Florida boy can receive additional treatment after contracting a rare brain-eating amoeba during a beach trip in Port Charlotte.
Eric and Jesse Ziegelbauer talk to reporters after their son Caleb was moved from an ambulance to an airplane, pictured in the background, at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. The family is flying to Chicago so the 13-year-old Florida boy can receive additional treatment after contracting a rare brain-eating amoeba during a beach trip in Port Charlotte. [ DIRK SHADD | Times ]
Published Aug. 31|Updated Aug. 31

TAMPA — Caleb Ziegelbauer has only been to the beach twice.

The 13-year-old and his family went on June 10 and July 1, and both times, the Charlotte County residents went to Port Charlotte Beach.

Yet talking about that second trip brought Caleb’s mother, Jesse Ziegelbauer, to tears on the tarmac at Signature Flight Support — adjacent to Tampa International Airport. While in the water, her son contracted a rare brain-eating amoeba.

“Caleb is brave, Caleb is strong, Caleb is a fighter, Caleb is young, Caleb is healthy,” she said. “Caleb has a brain capable of healing. And now we do the next best thing. We won’t dwell on the last two months. We move forward. We continue to heal.”

Eric and Jesse Ziegelbauer prepare to board a Jet ICU plane after speaking with reporters about their son Caleb, who was moved from an ambulance to the Tampa-based air ambulance company's plane at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. The family is flying to Chicago so the 13-year-old Florida boy can receive additional treatment for the rare brain-eating amoeba he has been fighting for more than two months.
Eric and Jesse Ziegelbauer prepare to board a Jet ICU plane after speaking with reporters about their son Caleb, who was moved from an ambulance to the Tampa-based air ambulance company's plane at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. The family is flying to Chicago so the 13-year-old Florida boy can receive additional treatment for the rare brain-eating amoeba he has been fighting for more than two months. [ DIRK SHADD | Times ]

After fighting the infection for nearly two months, Caleb is being transferred Wednesday to the Shirley Ryan AbilityLab rehabilitation center in Chicago. Jet ICU, a Tampa-based company that flies patients such as Caleb for necessary treatment, provided the flight to the Ziegelbauers for free.

Jet ICU chief flight medic Jared Wayt said it was the least they could do after all Caleb has battled in the hospital.

Jet ICU Chief Flight Medic Jared Wayt talks to reporters after Caleb Ziegelbauer was moved from an ambulance to an airplane, pictured in the background, at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. Jet ICU, a Tampa-based air ambulance company, is flying the 13-year-old to a Chicago facility where he will continue his treatment for a brain-eating amoeba he contracted after a visit to a Port Charlotte beach on July 1.
Jet ICU Chief Flight Medic Jared Wayt talks to reporters after Caleb Ziegelbauer was moved from an ambulance to an airplane, pictured in the background, at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. Jet ICU, a Tampa-based air ambulance company, is flying the 13-year-old to a Chicago facility where he will continue his treatment for a brain-eating amoeba he contracted after a visit to a Port Charlotte beach on July 1. [ DIRK SHADD | Times ]

On July 1, Caleb played in the water, like any other kid cooling off from the Florida heat. By July 7, he told his mom he had a headache. The next day, he had a fever, and on July 9 he began hallucinating. Caleb’s parents took him to the emergency room and doctors discovered he had primary amebic meningoencephalitis, a rare disease from a brain-eating amoeba called Naegleria fowleri.

It can be found in freshwater like where Caleb played in Port Charlotte.

Before Caleb got on the jet, the flight crew carried on signs supporters made for him. One sign had the symbol for the Rebel Alliance in “Star Wars,” and read, “We’ve got you on the outside.” Another sign said, “Keep fighting on the inside.” That’s the motto the family has been using throughout Caleb’s treatment.

Thirteen-year-old Caleb Zieglebauer is seen in this undated handout photo courtesy of his parents Eric and Jesse Zieglebauer. Caleb contracted rare brain-eating amoeba after a visit to a beach in Port Charlotte last month.
Thirteen-year-old Caleb Zieglebauer is seen in this undated handout photo courtesy of his parents Eric and Jesse Zieglebauer. Caleb contracted rare brain-eating amoeba after a visit to a beach in Port Charlotte last month. [ Photo courtesy of the Zieglebauer family ]
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Caleb came out of the ambulance next, resting on a stretcher. His neck was supported by a gray pillow and he wore his baseball hat — sweat marks around the brim from his time on the field.

On July 10, Caleb began receiving treatment from the CDC for the infection. He completed the 28-day process, Jesse Ziegelbauer said, and he is in stable condition and ready for the next step.

That will be a program for disorders with consciousness at the Shirley Ryan AbilityLab in Chicago. Ziegelbauer said it’s the best rehab program in the country.

The airplane transporting 13-year-old Caleb Ziegelbauer and his parents, Eric and Jesse Ziegelbauer, takes off at Signature Flight Support at Tampa International Airport on Wednesday in Tampa.
The airplane transporting 13-year-old Caleb Ziegelbauer and his parents, Eric and Jesse Ziegelbauer, takes off at Signature Flight Support at Tampa International Airport on Wednesday in Tampa. [ DIRK SHADD | Times ]

There were many long, anxious nights for Caleb’s parents. Jesse Ziegelbauer said one night at 3 a.m. she printed out around 75 photos of Caleb. She wanted the doctors treating her son to walk into the room and see her son the way she always has: a kid who loves baseball, who wants to be an epidemiologist, who loves “Star Wars” and watched every episode of “House.” It was a way to humanize him, she said, so doctors didn’t just see the bedridden teen who was slowly hitting milestones such as opening his eyes or making small movements of his fingers.

“Just take it day by day,” she said. “Every finger twitch we see makes us excited for what’s to come and hopeful.”

Ziegelbauer has been posting updates about her son on a Facebook group called Fighting on the Outside for Caleb Ziegelbauer. There are nearly 2,000 members. Her sister, Katie Chet, created a GoFundMe page for Caleb which has raised around $65,000 from more than 850 donations.

Thirteen-year-old Caleb Zieglebauer is seen in this undated handout photo courtesy of his parents Eric and Jesse Zieglebauer. Caleb contracted rare brain-eating amoeba after a visit to a beach in Port Charlotte last month.
Thirteen-year-old Caleb Zieglebauer is seen in this undated handout photo courtesy of his parents Eric and Jesse Zieglebauer. Caleb contracted rare brain-eating amoeba after a visit to a beach in Port Charlotte last month. [ Photo courtesy of the Zieglebauer family ]

The amoeba entered Caleb’s nose and traveled to his brain. His mother advises people to wear nose plugs when swimming in freshwater to prevent contracting a similar infection.

She said in fourth grade Caleb wrote in a notebook, “Never settle for anything less than 97%.” Now, she said, he is striving for 100%.

And when he completes his treatment? His mom said the first thing he’ll want is something with barbecue sauce.

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