For Clarence and Ebony Carr, the Fourth of July was supposed to be a carefree day on Lake Murray with family and friends. But two weeks later, their 12-year-old son, Jaysen, was gone — the result of an infection caused by a rare brain-eating amoeba. Now, the South Carolina parents are speaking out, hoping to prevent another family from experiencing the same pain.
According to an interview with The Associated Press, Jaysen spent hours in the water over the holiday weekend, tubing behind a boat, swimming and fishing with friends. “Mom and Dad, that was the best Fourth of July I’ve ever had,” Clarence Carr recalled his son saying.
Less than a week later, Jaysen developed what appeared to be a regular headache. His symptoms worsened quickly, from nausea to disorientation and extreme fatigue. Doctors eventually delivered the devastating news: Jaysen had been infected with Naegleria fowleri, a microscopic organism that destroys brain tissue after entering the body through the nose.
Clarence and Ebony Carr said they never heard of it. “I can’t believe we don’t have our son. The result of him being a child was losing his life. That does not sit well. And I am terrified it will happen to someone else.”
The Centers for Disease Control and Prevention (CDC) explains that the amoeba is found in warm freshwater, such as lakes, rivers and hot springs, especially when temperatures are high. It causes primary amebic meningoencephalitis (PAM), a fast-moving and nearly always fatal brain infection. Between 1962 and 2024, only four of the 167 reported U.S. cases have survived, per the CDC.
Jaysen died on July 18, just one week after he began showing symptoms.
South Carolina, like most states, doesn’t require reporting infections or deaths caused by the amoeba. The lake was never closed, and the Carr family says no public notice was issued. The grieving parents told AP that if they hadn’t spoken up, they wonder whether anyone would have even known what happened.
The South Carolina Department of Environmental Services told PEOPLE that routine testing for Naegleria fowleri isn’t currently recommended — not by the CDC or the Environmental Protection Agency. “We’re not aware of any states that perform routine sampling of ambient water for this amoeba,” the department said.
“The CDC doesn’t recommend testing untreated recreational water or posting signage for Naegleria fowleri because the location and number of amebas can vary over time within the same body of water, there are no standardized testing methods to detect and determine the number of Naegleria fowleri in the water and people might mistakenly think that water without signs is free of Naegleria fowleri.”
Still, Clarence and Ebony Carr believe families deserve better communication and warnings, especially during the hot summer months when people are most likely to be in the water.
The CDC notes that the amoeba infects people when water forcefully enters the nose, typically during activities like diving or jumping into lakes. It doesn’t spread person to person, and swallowing contaminated water won’t cause infection. The only guaranteed protection is avoiding warm freshwater entirely, but experts recommend using nose clips or keeping your head above water to reduce risk.
Though the infection is extremely rare, its outcomes are often fatal and fast. That’s part of what makes the Carr family’s story so heartbreaking and so urgent. “We definitely want the public to know that there are major risks swimming in Lake Murray,” Ebony Carr said at a news conference on Tuesday, according to PEOPLE. “There needs to definitely be some awareness about it, and we don’t want his death to be in vain, because had we known, he wouldn’t have been in it.”
Jaysen was known as a loving son, a middle school band member and a sports enthusiast who connected easily with others. His dad described him as someone who could make a new friend in five minutes. “He either loved you or he just didn’t know you,” Clarence Carr told AP.
The CDC has launched a pilot program using an experimental treatment that has shown promise in laboratory studies. Still, prevention remains the most effective defense against it.
As they grieve, these parents say they will continue to push for broader awareness, not only to honor their son but to help save lives. “A child should not have to lose their life for doing something they assume was safe,” Clarence Carr.
For more information on Naegleria fowleri and how to stay safe, visit the CDC’s website.