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Rare Neurological Condition Md. Boy Facing Has Doctors Puzzled

GLEN BURNIE, Md. (WJZ) -- At just five-years-old, a Glen Burnie child is facing a rare illness that is leaving doctors puzzled.

WJZ's Marcus Washington has more on the condition, and the light of hope after nearly two months in the hospital.

"He loves to make jokes, loves to play with his trains. Just extremely outgoing," said Zarinah Cuffee, the mother of Cameron Longley.

In mid-March, five-year-old Cameron went from being a boisterous little boy to incapacitated after a low-grade fever led to uncontrollable brain seizures.

"His toes turned in and his hand curled up," said Shaun Longley, Cameron's father.

Cameron lives in Glen Burnie with his mother, but was with his father at his Hyattsville home when the first seizures happened. He was rushed to Children's National Medical Center in Washington, D.C.

Pediatric neurologist Dr. Elizabeth Wells says traditional treatment did not work. Cameron started developing conditions that could kill him.

"Your biggest fear as a parent looks like it's coming true in front of your eyes. You're looking at your child, who is always full of life, and he's just lying there helpless," Cameron's mother said.

Doctors now believe Cameron has one of the rarest neurological conditions in the world. It's called febrile infection-related epilepsy syndrome, or FIRES, an Epilepsy Syndrome in which the immune system attacks healthy brain tissue.

"So less than 100 reports worldwide so far of this disease," said Dr. Wells.

Cameron has been hospitalized now for more than 50 days straight -- but days ago, doctors tried a new therapy that is showing positive results.

"So we know that our therapies are helping, but we don't know if it's enough for a cure," Wells said.

Cameron's parents say they just want their boisterous little boy back.

Washington, D.C. doctors are sharing some of Cameron's lab results with other doctors around the world. The goal is to help other children who may suffer from the same rare condition.

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