Florida family who lost son to brain-eating amoeba warns others about dangers of swimming in fresh waters

As the air temperatures rise this summer, so do water temperatures. That means an increased risk of contracting a deadly brain-eating amoeba.

A family in Sanford hopes no one has to suffer the same loss they did. Nine years ago, Steve and Shelly Smelski lost their 11-year-old son, Jordan, to a brain-eating amoeba.

The amoeba is almost always deadly and the tests for it take too long. By the time doctors discover it, it's almost always too late. 

The key to survival is catching it early. A major problem, until now. 

Doctors at AdventHealth have come up with a way to detect it in hours, not days. For some, that could make all the difference in the world.

The old way of testing involved sending a sample to the Centers for Disease and Control Prevention in Atlanta, Georgia, which could take three or days. Now, it only takes around five hours to do a and it is done at AdventHealth in Orlando. They use the same equipment that processed COVID-19 tests during the pandemic. 

Dr. Jose Alexander, a clinical microbiologist, said his passion to find a faster way to test for the amoeba is connected to his close relationship with the Smelskis.

The Smelskis started a foundation in Jordan's name that raises money for research and spreads awareness – something they wish they'd had nine years ago.

"See we never let Jordan swim in the lake. We knew about the cases. We just didn't know what it was called. We didn't know it could be in hot spring water and it didn't even occur to us going down that slide could be a problem," Steve said. 

The Smelskis were on vacation in Costa Rica when Steve and Jordan spent the day swimming in a hot spring. The next day, Jordan had a bad headache.

Days later, they were on a flight home to Orlando. Jordan ended up getting sicker, and they ended up in the emergency room. By the time doctors figured out what was wrong, it was too late.

"It's been such a tragic event to try to live through, and I just don't want any other family to have to go through what we've gone through," Shelly said. 

The couple is thrilled this new faster test can help families today, and they're happy the drug to kill the amoeba and save the patient is more readily available — something they wish they had for Jordan.

"The drug wasn't local, it was at the CDC in Atlanta, and it arrived two hours after Jordan died. And we wish somebody had done it for us," Steve said. 

While the medical advancements are a huge step forward, the couple said the danger is still very real.

"I just warn parents right now the criticality of how dangerous it is swimming in fresh water right now. This is the amoeba season," Shelly said. 

FloridaHealth