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Father of boy who died from brain-eating amoeba creates awareness foundation

After the death of his son, Steve Smelski set up a foundation to spread awareness of amoebas

In 2014, Steve Smelski and his wife experienced what no parent ever wants to experience — the loss of their young son to what’s commonly known as a brain-eating amoeba.

“On Monday night, he started hallucinating, which is just about seven days after swimming,” Smelski recalled.

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Jordan Smelski was 11 when his life was cut short after he contracted naegleria fowleri — a brain-eating amoeba — while on vacation in Costa Rica.

“He was seeing things. He though there were spiders on the ceiling. He goes, ‘Oh, mom, look; that restaurant, all the tables had 3 seats,’” Steve Smelski said.

According to Steve Smelski, the day before his son began to feel sick, they had been at the resort pool, which used water from a waterfall that wasn’t chlorinated and water that came from underground that had a temperature of about 96 degrees.

Jordan Smelski was a young boy who had a passion for sports, zip lining, art and video games.

“He was our only child, and we felt like everything ended for us, and we’d always thought up until that point, he was our purpose in life,” the father said.

After their painful loss, Steve Smelski and his wife founded the Jordan Smelski Foundation for amoeba awareness.

“It took us a couple months to realize he was still our purpose — just in a different way. So we get to talk about him to share the Jordan story,” he said. “We try to help others more and not think so much of ourselves now. We do a community give-back every Christmas, and we open Jordan’s sporting goods store, and we give away used or gently used equipment for kids.”

Through their efforts, the foundation also organized the first amoeba summit in Central Florida in 2015.

“We had Orange County public health and Seminole County public health both involved, and we got involvement from doctors. We brought in experts from around the country,” he said. “We shared information, and the next boy that came into the hospital was Sebastian Deleon, and he lived.”

Steve Smelski told News 6 he’s now trying to get the Center for Disease Control and Prevention to develop an early detection test. The fatality rate of someone infected with this disease is 98%.

“You can have three kids swimming in a lake, and one gets it, and the other two don’t. We don’t know why. There’s no research that’s been funded,” he said.

For more information on the Jordan Smelski Foundation for Amoeba Awareness, visit the group’s website here.

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