They're sharing their nightmare for the first time, with the hope that no family has to ever experience what they've been through.
11-year-old Jordan Smelski died in July after being infected with a rare amoeba found in freshwater. He was the third person to die from the rare infection in a three-week span. Living in Florida, the family never allowed their son to swim in lakes or rivers due to the risk of the amoeba, but they didn't realize it could also live in hot springs.
"it brought us to our knees, we were educated, but we didn't have all the information", said Shelly Smelski, Jordan's Mother.
Steve Smelski and his son swam for hours in a hot springs at a resort in Costa Rica, a place the deadly amoeba Naegleria Fowleri could exist.
While his Dad and dozens of others swimming that day were fine, Jordan's body was attacked by a rare amoeba that has no cure and is fatal in 99 percent of cases. It can take days to show symptoms -and - few days later, Jordan had severe headaches and was taken to the hospital, hallucinating and violently sick. Less than 72 hours later, the Smelski's had lost their "ray of light"
"we ask why everyday, it's a nightmare that gets worse everyday", said Steve Smelski.
Within a week of Jordan's death a 9-year-old in Kansas also died from the brain eating amoeba. Since many doctors have never seen the rare infection, there are fears that the brain eating disorder is under-reported as a cause of death. Jordan's parents were told he had meningitis until the final stages.
"we didn't know how critical that it was, we thought Jordan had Meningitis and we thought that we would be taking him home in 2-3 weeks.
Only three people have survived the rare infection. One of the biggest challenges is the infection masks other diseases. By the time a family realizes it's the deadly amoeba, it's often too late.
According to the CDC, the deaths are very rare, with just 134 documented cased in 50 years, but Central Florida and its warm waters has the most victims.
The website, Kylecares.com documents over two dozen fatal cases, many are children from Florida. Seven-year-old Kyle Lewis died in Texas, also from Primary Amebic Meningoencephalitis (PAM), caused by the deadly amoeba.
The Smelski's have launched a foundation in Jordan's name to raise awareness. They plan to speak to schools and warn families. Warning them there are cases all over the world. The amoeba enters the body through the nose and can be lurking in any freshwater body of water or hot springs that's over 78 degrees. It can also live in unchlorinated pools. While no one can explain why the amoeba finds one person out of hundreds of swimmers, too many families know one is enough.
"If you think it can't be your child, we ask that you think again. We would have never thought we'd lose our son to this", said Shelly Smelski.
PAM continues to claim lives around the world, including five recent deaths in Pakistan. In warm climates, like Florida, water can stay warm enough for the amoeba into early fall.
The Smelski's say their loss gets more difficult each day and say only their faith is helping them to move forward.