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Family of boy with brain infection they say was caused by deadly amoeba speaks out

“He’s made of pure grit and determination, and it’s exactly that which we’re banking on to wake him up."
Posted at 6:00 AM, Sep 01, 2022

TAMPA, Fla. — The family of a 13-year-old Charlotte County boy says their son has a brain infection they say was caused by a deadly freshwater amoeba. They say he got sick after swimming at the Port Charlotte Beach Complex.

Three local, state and federal government agencies and several tests could not definitively confirm the cause or illness. Back in July, test results from the CDC show he was not positive for Nagleria fowleri and it came back inconclusive for the illness. Still, something happened to the teen.

On Wednesday afternoon his parents, Jesse and Eric Ziegelbauer spoke out for the first time since their son was admitted to Golisano Children’s Hospital.

“Just know for 54 days, room 4117 was our home,” said Jesse, Caleb’s mom. “We don’t dwell on the last two months. We continue to heal.”

His family says Caleb is heading to Shirley Ryan rehabilitation facility in Chicago for further treatment, specifically what they called a consciousness program.

"Caleb has only been to the beach twice in his life. It was June 10 and July 1 and it was the same beach — it was Port Charlotte Beach Complex," Jesse explained.

Caleb went to Golisano Children’s Hospital on July 9 with a severe headache, hallucinations, and a high fever. Doctors speculated he was infected withthe freshwater amoeba. They collected two samples from him on July 10, testing him to confirm the disease, primary anemic meningoencephalitis (PAM).

The CDC said the tests for the amoeba came back negative, while Lee Health said the results for PAM were inconclusive.

Typically, the state Department of Health or county officials will be able to confirm whether someone contracted this amoeba. Like the CDC, the DOH and Charlotte County both told Fox 4 there were no confirmed cases.

"Even though there was not a confirmed result for PAM to report to the Department of Health, Caleb’s doctors believe this to be the cause of his illness and are treating him accordingly," Lee Health said in a previous statement to Fox 4.

Since Caleb was admitted, he has been at Golisano’s ever since.

When we asked Jesse if doctors are still treating him for the amoeba, even though his test came back negative for the CDC she said, “the amoeba is a 28-day protocol from the CDC and that ended quite a bit ago. It’s now the healing process.”

“He’s made of pure grit and determination, and it’s exactly that which we’re banking on to wake him up. I can’t wait for him to share his story with you,” Jesse said. “Caleb is brave, Caleb is strong, Caleb is a fighter. Caleb is young. Caleb is healthy. Caleb has a brain capable of healing.

Jesse said on Wednesday Caleb is “stable” when asked how he is doing.

“He’s made of pure grit and determination, and it’s exactly that which we’re banking on to wake him up. I can’t wait for him to share his story with you,” she said. “We just take it day and day and every finger twitch we see makes us excited for what to come and hopeful.”

While it's hard to tell what the future will bring in Chicago, the family believes their southwest Florida community is the reason their son is still alive.

"Although thank you will never be enough, how can you thank thousands of people and make it sound sincere?" Jesse said holding back tears.

We’ve reached out to the CDC to see if another test for the amoeba has been sent to them. As of Wednesday night, we’re still waiting to hear back. We also contacted the DOH about the family's claims and they did not respond.

Nagleria fowleri is extremely rare and you can only be infected through the nose. It is naturally occurring in fresh and brackish water, which is why the CDC says it doesn’t test the water for it.

The fatality rate is 97-percent and only four people out of 154 cases since 1962 have survived.