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Florida teen suffering from brain-eating amoeba begins treatment at Chicago’s Shirley Ryan AbilityLab

CHICAGO (CBS) — Parents of a teen from Florida are desperate to save their 13-year-old son, who has a rare and often deadly disease caused by a brain-eating amoeba.

They have now arrived in Chicago on a medical mission. The boy, Caleb Ziegelbauer, is receiving treatment at the acclaimed Shirley Ryan AbiltyLab in Streeterville.

CBS 2’s Charlie De Mar spoke Wednesday night to a doctor who is working hard to find a drug that could save lives.

Caleb and his family landed in Chicago on Wednesday. They had been waiting for a bed to open at the Shirley Ryan AbilityLab.

While Caleb’s his future is still unknown, his parents spoke about his condition Wednesday.

“Caleb is brave. Caleb is strong. Caleb is a fighter,” said Caleb’s mother, Jesse Ziegelbauer.

As WTSP-TV CBS 10 in Tampa Bay reported, Caleb and his family took a trip top Port Charlotte, Florida in July. Peace River runs along the Port Charlotte coast, and is known to have brackish water—or a mix of salt and freshwater, the station reported.

Days later, Caleb was disoriented and had a fever and headache. The 13-year-old has been in a hospital in Florida for the past 54 days – battling a brain-eating amoeba called Naegleria fowleri that his family believes he contracted while swimming.

“We won’t dwell on the last two months,” said Jesse Ziegelbauer. “We move forward. We continue to heal.”

Caleb and his family were flown free of charge from their home in Florida to Chicago – where Caleb will continue his treatment at the Shirley Ryan AbilityLab.

“He’s made of peer grit and determination,” his mother said, “and it is exactly that which we are banking on to wake him up.”

dr David Siderovski is a professor and chair of the Department of Pharmacology and Neuroscience at the University of North Texas.

“I’m trying with colleagues to invent new drugs to actually cure brain eating amoeba,” Siderovksi said. “This amoeba swims up and bursts through the nasal cavity and into the brain, and starts to eat the cells of the brain.”

While rare, brain-eating amoebas are lethal. The Centers for Disease Control and Prevention says in the 154 known cases in the US since 1962, only four people have survived.

“So if you avoid diving or plunging into the water, you can avoid having the brain-eating amoeba go up through the nasal cavity and up into the brain,” Siderovksi said.

Now, Caleb’s parents are hopeful their son – who loves baseball and dreams of one day becoming an epidemiologist – will beat the odds.

“I can’t wait for him to share his story with you,” said Jesse Ziegelbauer. “It is his and his only to share.”

According to the CDC most brain-eating amoeba infections have come from freshwater lakes and rivers in Southern states, where the water is warmer.

Caleb’s Family has set up a GoFundMe with help covering medical expenses. You can find it here.

Charlie De Mar

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