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

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CHICAGO (CBS) — The parents of a Florida teenager are desperate to save their 13-year-old son from a rare and often fatal disease caused by a brain-eating amoeba.

They have now arrived in Chicago for a medical mission. The boy, Caleb Ziegelbauer, receives treatment at the famed 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 were waiting for a bed to open at the Shirley Ryan AbilityLab.

While Caleb’s future is still unknown, his parents opened up about his condition on Wednesday.

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

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

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

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

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

“He’s made of courage and determination,” his mother said, “and that’s exactly what we’re counting on to wake him up.”

Dr. David Siderovski is Professor and Chair of the Department of Pharmacology and Neurosciences at the University of North Texas.

“I am trying with colleagues to invent new drugs to actually cure the brain-eating amoeba,” Siderovksi said. “This amoeba swims and bursts through the nasal cavity and into the brain, and begins to eat brain cells.”

Although rare, brain-eating amoebas are deadly. The Centers for Disease Control and Prevention says that of the 154 known cases in the United States since 1962, only four people have survived.

“So if you avoid diving or diving in water, you can prevent the brain-eating amoeba from going up through the nasal cavity and into the brain,” Siderovksi said.

Now Caleb’s parents are hoping their son – who loves baseball and dreams of one day becoming an epidemiologist – beats the odds.

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

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

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

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