COLUMBIA, S.C. (WSPA) – A South Carolina family is mourning the heartbreaking loss of their 12-year-old son, Jaysen Carr, who died earlier this month after being exposed to a rare and deadly, brain-eating amoeba while swimming in Lake Murray.

The Carr family is urging state officials to take action to prevent future tragedies and raise awareness about the hidden dangers in South Carolina’s freshwater lakes.

According to Jaysen’s family, he was enjoying a summer day at the lake with friends over the July 4th weekend when he was unknowingly exposed to Naegleria fowleri, an amoeba that can cause a brain infection.

The amoeba entered his body through his nose.

“Had he known the risks, had we known the risk of him swimming in that way, nobody would have ever chosen to get in,” said Ebony Carr, Jaysen’s mother.

The Carr family is now calling on state agencies to implement regular testing of freshwater lakes, similar to how coastal beaches are monitored.

“A child should not have to lose their life for doing something they assumed was safe,” said Jaysen’s father, Clarence Carr. “They should not have to double-check to see if they are going to live or die from being a boy.”

Their attorney, Tyler Bailey, criticized the state’s response and lack of action.

“There’s never any testing of the water. There’s no questioning of where Jaysen was swimming and playing in the water to figure out where this happened,” Bailey said. “That’s the whole purpose of an independent investigation because we’re doing the work that the agency should have done.”

Dominion Energy, which owns and operates Lake Murray, issued a statement expressing their condolences and acknowledging that while such cases are rare, naturally occurring microorganisms are common in freshwater environments.

“We are deeply saddened by the tragic loss of Jaysen Carr and extend our heartfelt condolences to his family and other loved ones during this incredibly difficult time. According to public health agencies, naturally occurring microorganisms are present in freshwater lakes and rivers, as well as other unchlorinated water sources, but these types of tragedies are rare. We encourage everyone to follow safety guidance from public health agencies when engaging in recreational water activities.” said in a statement from Rhonda Maree O’Banion, Dominion Energy Director, Media Relations-South Carolina.

Department of Public Health said the following:

“DPH does not have plans for an investigation related to the tragic death of a child in South Carolina due to Naegleria fowleri. Our agency is committed to keeping the public informed about public health threats with actionable information that allows the public to make informed decisions about their health … DPH extends its sincerest condolences to the Carr family.”

Department of Environmental Services said, “SCDES monitors ambient water bodies for certain bacteria that have federal and state recreational water standards. As examples, we monitor ocean water for Enterococcus bacteria, and we monitor lakes and rivers for E. coli and types of algae that can produce toxins. There are no federal or state recreational water standards for the Naegleria fowleri amoeba, meaning there is no science-based threshold for what would be considered a “safe” or “unsafe” level of Naegleria fowleri in ambient water. Neither the U.S. Environmental Protection Agency (EPA) nor the U.S. Centers for Disease Control and Prevention (CDC) recommend the routine sampling of ambient water for Naegleria fowleri. We’re not aware of any states that perform routine sampling of ambient water for this amoeba. “

Brandi Giles, a nurse practitioner, noted that while Naegleria fowleri is indeed a deadly organism, it’s also naturally found in many warm freshwater bodies.

“They’re going to be there. You’re going to test it, and they’re going to be there,” Giles said. “That’s it. It’s something that is known to live in the freshwater.”

She advised that after swimming in lakes, anyone experiencing flu-like symptoms, headaches, or nausea should seek immediate medical attention.