ORLANDO, Fla. – In August 2016, 16-year-old Sebastian DeLeon and his family traveled from South Florida to start what was supposed to be a fun vacation at Orlando’s theme parks.
“On Sunday, we were planning on having a pool day and watching the game and spending it with our family,” said his mother, Brunilda Gonzalez. “(Sebastian) woke up in the middle of the night complaining that he had a headache, and it was strong.”
“I was on my side, and at that moment, it felt like I was getting pushed into (the side) like the pillow,” Sebastian said. “Then, when I woke up, I just couldn’t move, my body. I felt stiff. That’s when I told my mom, ‘Mom, this is not normal.’”
“I just woke up, woke up my husband and told him, ‘Listen, we have to go to the urgent care or the emergency room because this is not looking good,’” Gonzalez said.
“They asked me if I’ve been in fresh water, and that’s when I told them that I had,” Sebastian said.
Doctors at AdventHealth in Orlando immediately suspected Sebastian may have contracted Naegleria Fowleri, better known as the brain-eating amoeba, by swimming in a summer camp pond.
The amoeba is a microscopic organism that quickly destroys brain tissue and can kill in just days.
“I still remember (when doctors told me), but at that moment, I felt like time stopped,” Gonzalez said. “The next words were, ‘I want you to say your goodbyes because we’re going to put him in a coma, and we don’t know if he’s going to wake up.’”
The Centers for Disease Control and Prevention found the deadly amoeba can be found in any body of fresh water. It infects humans if they get water up their nose.
Most reported infections happen in southern states, where the climate is usually warmer with the most reported in Florida and Texas.
Cases have also started to emerge moving north in states, like Virginia, and as far north as Minnesota.
Todd MacLaughlan is the CEO of Profounda Pharmaceuticals in Orlando. Aside from creating its own brands of healthcare products, Profounda is also the only U.S. distributor of Impavido – the only known drug that kills this amoeba.
“I got the call -- first one from the hospital, and then I got a call from the Florida Department of Health, and then I got a call from the CDC -- all within the span of about two hours,” MacLaughlan said. “My son immediately hopped in the car in his pajamas because he didn’t want to waste time, and he got the drug and drove directly to the hospital. Within, you know, 20 minutes he was at the hospital with the drug, and that really, I think, is what helped Sebastian.”
Sebastian became one of only four known people to survive the brain-eating amoeba in the United States. He worked through months of physical therapy to re-learn how to walk and even tie his shoes.
MacLaughlan said a 28-day supply of Impavido costs $48,000, but he said patients will never pay more than $100.
Despite that, and the fact that every minute counts when someone is infected, very few hospitals in the country have Impavido in their pharmacy.
“Why do people keep it on hand?” MacLaughlan asked. “The answer is because they’ve seen a case of it before. They have cases, so they can see it. Whereas, I’ve never seen that before, so therefore, I don’t need it. It’s like you having an airbag. I don’t need an airbag. I’ve never used an airbag. Well, if you get in a car accident, you’re going to need that airbag.”
Jordan Smelski’s father believes his 11-year-old contracted this amoeba while swimming in hot springs during a family vacation to Costa Rica.
“Saturday, he got sluggish in the afternoon and started vomiting at midnight on Saturday,” Steven Smelski said. “We took him to the emergency room on Sunday. They diagnosed him with viral meningitis, they admitted him to Children’s Hospital on Monday. We thought he was going to be okay because he was in good spirits on Monday. God gives you those last few hours, and you don’t even know it.
“They ordered the drug from the CDC, and it arrived at 8 a.m. That was Wednesday morning. He died at 6:30 that morning,” he said.
Smelski said his son’s death awakened a mission within his wife and him.
“We found out Jordan was the fifth child that died from this at his hospital, and we realized that if we didn’t step up, a sixth child would end up with the same thing and the same issues that we went through, and the parents would go through, too,” he said.
Steven and Shelly Smelski created the Jordan Smelski Foundation for Amoeba Awareness, and they started hosting annual amoeba summits featuring top doctors in the field.
“We shared information, and the next boy that came into the hospital was Sebastian DeLeon, and he lived,” Smelski said.
After treating both Jordan and Sebastian, doctors at AdventHealth were concerned that the test to detect this deadly amoeba was taking too long to get results back.
The process requires a spinal tap, which is shipped to the CDC in Atlanta. Lab workers deliver results in approximately five or six days – precious time if the patient is infected.
Dr. Jose Alexander and his team took it upon themselves to come up with a faster solution.
Their tool is a PCR test, which was made more widely available during the COVID pandemic. Their new test trims that wait time for results to just a few hours.
“I say it’s just putting together the recipe in a right way,” Alexander said. “So I’m surprised that there are no more of these tests done regionally in different parts of the U.S.”
He said he hopes other hospitals latch on to this new test, adding he was welcome to sharing his research.
“This is a game changer,” Smelski said. “If every hospital has the test available, they can check it themselves without sending it to the CDC in Atlanta.”
“Time is of the essence at this point,” Gonzalez said. “If you can get a result in five hours when we would have to wait days -- it’s amazing.
“The care that they took of my child -- he wasn’t an experiment. He was a human being being treated, and they were looking for solutions. They got involved in a human way because we’re human. I am eternally grateful,” she said.
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