I’m one of 4 people who survived the rare brain-eating amoeba

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I’m one of 4 people who survived the rare brain-eating amoeba

A Florida student said he lost the majority of his motor skills after contracting a deadly brain-eating amoeba while swimming in a s

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A Florida student said he lost the majority of his motor skills after contracting a deadly brain-eating amoeba while swimming in a stagnant pond.

“It was tough. I had to, like, learn how to walk, how to write again, how to do all the basic stuff again,” Sebastian Deleon, 22, told Click Orlando of the harrowing saga.

The Weston native is one of four people — out of 154 recorded cases — to survive infection by naegleria fowleri, the deadly brain-eating amoeba causing panic across the country. This insidious critter infiltrates swimmers’ noses and takes root in their brain, infecting them with primary amebic meningoencephalitis — a condition that’s fatal 97% of the time, per the Centers for Disease Control and Prevention.

Although found worldwide, the microscopic monster predominantly resides in warm freshwater, such as lakes and rivers and hot springs, and can even show up in poorly-maintained swimming pools. It cannot survive in salt water and cannot spread from one person to another.

Sebastian Deleon (second from left) is one of four individuals -- out of 154 recorded cases -- to survive infection by naegleria fowleri.
Sebastian Deleon (second from left) is one of four individuals — out of 154 recorded cases — to survive infection by naegleria fowleri.
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Deleon reportedly contracted the bug six years ago, when he was 16 while swimming at a stagnant pond near his home in Broward County.

“I went in, I believe, like, three times or twice,” said Deleon, who hadn’t heard of the parasite at the time. “I did jump in there, and I did not cover my nose, and I just cannon-balled in a way.”

Deleon didn’t think anything of it until later after he experienced an excruciating headache while vacationing with his parents, Rafael DeLeon and Brunilda Gonzalez, in Orlando.

“This headache was different,” he said. “It felt more like — the description that I kept saying at the hospital was that it felt there was a smooth rock on top of my head, and someone was pushing it down.”

Deleon added, “I couldn’t get up, and I couldn’t move and stuff like that, so my parents were like, ‘OK, there’s something wrong with this boy.’ “

He compared the feeling to “roller coasters spinning around and around and around, and I had to wear sunglasses, and the sun wasn’t even out.”

Deleon’s parents subsequently rushed their son to the hospital, where doctors initially suspected he had meningitis, Click Orlando reported. However, a spinal tap revealed that he had the aforementioned water-borne amoeba, which medics suspected had infiltrated his noggin via his nose.

Naegleria fowleri infiltrates swimmers' noses and takes root in their brain, infecting them with primary amebic meningoencephalitis -- a condition that's fatal 97 percent of the time.
Naegleria fowleri infiltrates swimmers’ noses and takes root in their brain, infecting them with primary amebic meningoencephalitis — a condition that’s fatal 97% of the time.
Getty Images/Science Photo Library

Fearing the worst, doctors administered the patient several different antibiotics, including the novel drug Impavido, before placing him into a coma for about a week, the Daily Mail reported. During that time the poor boy had sustained severe brain damage and lost around 20 pounds.

On the plus side, Deleon’s health had incredibly begun to improve and he was transferred to Joe Dimaggio’s Children’s Rehabilitation Center where nurses helped him regain the ability to walk up and down stairs and improve his muscular strength to where he could lift more than 5 pounds.

Deleon has since recovered by leaps and bounds, which medics found miraculous given that half of naegleria fowleri patients don’t make it past five days regardless of treatment. He is currently at college pursuing a degree in criminal justice.

Although found worldwide, the water-borne amoeba predominantly resides in warm fresh water, such as lakes and rivers and hot springs, and can even show up in poorly- maintained swimming pools. It cannot survive in salt water and cannot spread from one person to another.
Although found worldwide, the water-borne amoeba predominantly resides in warm fresh water, such as lakes and rivers and hot springs, and can even show up in poorly- maintained swimming pools. It cannot survive in salt water and cannot spread from one person to another.
Getty Images/iStockphoto

“Wow, I really am a miracle,” said Deleon while zooming into a 2016 Amoeba summit hosted by the Jordan Smelski Foundation for Amoeba Awareness.

Many experts say that the pupil survived because he took Impavido, an experimental drug from Germany that was also administered to two of the other amoeba survivors.

“We felt optimistic at the very beginning because we knew that this was the first time a patient ever had received the drug while still conscious,” Todd McLaughlan, the CEO of Orlando-based Profounda Inc., Impavido’s only US distributor, told Click Orlando.

He added, “The most important thing is a proper diagnosis, and the second thing is speed: making sure you get that drug to them as quickly as possible. Think of the treatment for a severe car accident or severe brain trauma. This is to prevent the brain from swelling.”

Scientists suspect that the amoeba could be spreading further north due to climate change.
Scientists suspect that the amoeba could be spreading further north due to climate change.
Getty Images/Science Photo Library

Deleon ultimately hopes his saga can spread awareness about the insidious condition, which infected a 13-year-old boy in Port Charlotte, Florida, last month.

“We should probably have more research into this because there’s no reason why a kid should go into a pond and be scared that they could get something that we barely know what to do with,” Deleon said. “I really do think that we should spread more awareness about this because it’s something that no one, almost nobody, knows about it, and yet it’s so fatal.”

If that wasn’t frightening enough, the amoeba could be spreading due to climate change.

Scientists claim that warming temperatures are creating ideal conditions for the amoeba to increasingly thrive in bodies of water across the northern US.

Just last month, a Missouri woman died after contracting the amoeba while swimming at an Iowa beach.

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