Jordan Smelski died last summer just a few days after he came into contact with a deadly “brain-eating” amoeba while swimming.  The 11-year-old’s parents are now reaching out to other parents to make sure they know how to protect their children from the danger lurking in Central Florida waters.

The Smelski’s say every single day is tough knowing they’ll have to live it without their son. 

“What I miss about Jordan is his electric smile,” said Shelley Smelski, Jordan’s mother.

Steve and Shelley Smelski always did everything they could to keep their son safe, and that included keeping him out of the lakes and rivers near their Sanford home because they had heard about the “brain-eating” amoeba other kids had died from. 

But the Smelski’s didn’t know that the amoeba Naegleria fowleri could also be found in these hot springs the 11-year-old swam in with his dad in Costa Rica last June.  When Jordan got back from summer vacation, he started having severe headaches.  After going to the emergency room and being admitted to the hospital, the 11-year-old was diagnosed with meningitis.

But within three days, Jordan’s condition took a turn for the worst.  He began having hallucinations and seizures.  The Smelski's say their son was misdiagnosed with meningitis.  And within just days of their vacation, Jordan passed away, and the Smelskis found themselves planning a funeral for their only child.

“If you don’t think it can happen to you, we’re here to you it can.  And it’s the nightmare we wake up with every single day,” said Steve Smelski, Jordan’s father.

Jordan was exposed to the deadly amoeba in Costa Rica, but it’s in the warm waters of Central Florida where many other victims of the deadly amoeba have come into contact with it.

The CDC reports in the last 50 years, there have been just 132 cases of Primary Amebic Meningoencephalitis, or PAM reported.  But Florida has had the highest number of cases in the nation.  And since 2007, 7 of the 9 PAM cases reported in Florida were reported in Central Florida counties.

“You need to be afraid of it because if you get it, it’s fatal.  And if your child gets it, they’re gone,” said Steve Smelski.

The deadly amoeba thrives in warm lake and river water, and can be found in under-chlorinated pools.  It is not found in ocean water, or any saltwater.  And you can’t get infected by drinking the water.  You can only get PAM by getting water that contains the amoeba up your nose.

It’s unclear why so many who swim in waters where the amoeba is present don’t get sick, while some do.  Those infected with PAM usually only have a few days to live.

The Smelskis have started a foundation to raise money for research that they hope someday will lead to a cure.  The City of Sanford even declared May 2015 the Jordan Smelski Month for Amoeba Awareness.

Jordan’s parents also want to educate parents and medical professionals.  They believe many cases of meningitis over the years were really caused by amoebas, but just weren’t diagnosed correctly or ever reported.  They believe when a child comes in with symptoms like their son Jordan had, more questions should be asked.

“Jordan was our purpose when he was here with us, and he’s still very much our purpose.  And we honor him every day by trying to help save other lives,” said Shelley Smelski.

The Smelski’s have a golf tournament coming up in June to raise money for their foundation. 

For more information go to www.jordansmelskifoundation.org