WESTON, Fla. – It was a long road to recovery for 22-year-old Sebastian Deleon, who lost most of his motor skills six years ago after suffering a brain-eating amoeba.
“For the first couple of years, it was kind of hard. The part that I most remember is the part that I was in rehab,” Deleon recalled. “It was tough. I had to, like, learn how to walk, how to write again, how to do all the basic stuff again.”
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In 2016, Deleon — who was 16 years old at the time — remembered experiencing an unbearable headache while on vacation with his family in Orlando.
“This headache was different. 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,” he said.
Those were the initial symptoms of the deadly brain-eating amoeba.
“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. We need to take him somewhere,’” he said. “We got in the car. It felt like I was in one of those roller coasters spinning around and around and around, and I had to wear sunglasses, and the sun wasn’t even out.”
From his home in Weston, Florida, Deleon said he contracted the amoeba after swimming in a pond near his home.
“It was more of a pond, but we used to call it the lake because it was a huge pond, but the only thing was that it was still-water,” the college student recalled.
At the time, Deleon said he had never heard about the condition or the risk of swimming in freshwater.
“I went in, I believe, like, three times or twice,” he said.
Doctors told him it was one of those times the amoeba made its way up his nose and into his brain.
“That’s probably when I got it — that I did jump in there, and I did not cover my nose, and I just cannon-balled in a way,” he said.
The latest report from the Centers for Disease Control and Prevention shows that from 1962 to 2021, there have been 154 known cases of people contracting brain-eating amoebas, and only four people have survived.
Three of the survivors, including Sebastian, were treated with the drug commercially known as Impavido.
“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. — which is the sole distributor of Impavido in the U.S. — said.
The drug was brought from Germany by the CDC after it showed promise in treating the brain-eating amoeba found in warm freshwater.
“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,” McLaughlan said. “Think of the treatment for a severe car accident or severe brain trauma. This is to prevent the brain from swelling.”
According to Profounda, only 26 hospitals carry the drug nationwide. Seven of those hospitals are in Florida.
“It’s not anywhere near where it needs to be,” McLaughlan said.
For Sebastian, he hopes sharing his story will shed light on a condition that’s left so many families in heartbreak.
“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 could get something that we barely know what to do with,” Sebastian 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.”
Sebastian has made a full recovery and is now a pursuing a degree in criminal justice.
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