Jaysen passed away on July 18 after spending more than a week in the hospital.
COLUMBIA, S.C. — The parents of 12-year-old Jaysen Carr, who died this month due to a rare brain-eating amoeba, addressed the public for the first time on Tuesday. They urged state agencies and lawmakers to take steps to prevent other families from enduring the heartache they are now experiencing.
“Jaysen should still be here,” said his father, Clarence Carr, during a news conference in Columbia. “There’s really no justification for why he isn’t.”
Jaysen died on July 18 after his hospitalization lasted more than a week. His family reported that he contracted the infection after swimming in Lake Murray during the July 4th holiday.
The Carrs, accompanied by their attorney Tyler Bailey, noted that they have not received any communication from public health or environmental agencies following their son’s death. Bailey identified the infection as Naegleria fowleri, a type of amoeba that favors warm freshwater and is nearly always fatal once symptoms appear.
“Not a single agency has reached out. There hasn’t been any water testing or inquiries about where Jaysen was swimming,” Bailey stated. “We’re essentially doing the agencies’ work ourselves.”
Clarence Carr recounted how the illness unfolded.
“Initially, we thought it was just a typical migraine or headache,” he shared. “In retrospect, this was no ordinary headache. He was being attacked.”
After returning from the lake, Jaysen complained of a headache. “We gave him some Tylenol, and he said he felt better,” Clarence recounted. “The next day, he still felt unwell, so we visited the ER.”
Despite treatment, Jaysen’s condition deteriorated. Eventually, the doctors performed a spinal tap to rule out meningitis. “We did mention he had been in Lake Murray,” Clarence said.
Jaysen continued to battle against the odds. “I’ve never seen anyone fight like my son, and I likely won’t again,” Carr reflected. He wouldn’t give up.
The South Carolina Department of Health is not mandated by law to be informed by hospitals about cases like this nor are they required to track such infections. Typically, that information is relayed to the Centers for Disease Control at the federal level. Moreover, there’s no testing system for the amoeba, which is naturally present in many freshwater lakes and rivers.
“The state already tests our beaches,” Bailey pointed out. “There shouldn’t be a difference when it comes to our lakes, which is where residents actually swim.”
Bailey mentioned that the family intends to advocate for legislative changes, which would include mandatory testing of lakes for harmful pathogens, placing Naegleria fowleri on the list of reportable diseases in the state, and issuing health advisories when water temperatures exceed 80 degrees.
“We’re urging the Department of Environmental Services to begin testing right away,” Bailey stressed. “The system used for beaches can easily be replicated for our lakes.”
The family believes that Jaysen’s story underscores the necessity for informed decision-making.
“They claim it’s rare,” Ebony Carr noted. “But how rare is it really when it affects your child? That risk is just too significant.”
Bailey added that water temperature and levels are already monitored at Lake Murray, and he thinks those systems could likewise deliver health warnings.
“A straightforward alert like, ‘Water temperatures are high, there’s a risk of amoeba exposure—please exercise caution,’ might save lives,” he said.
Jaysen’s family described him as a talented athlete and musician who was also dedicated to supporting fellow students with special needs.
“He played in three different divisions of baseball. He was part of the honor band. He had a love that was unconditional,” his mother, Ebony Carr, shared. “He either loved you, or just hadn’t met you yet.”
The Carrs indicate that they are only just beginning their advocacy efforts. A state lawmaker, Rep. Jermaine Johnson, has expressed interest in introducing legislation later this year. However, the family seeks prompt action from public health and environmental agencies.
“Had we known the risks, he wouldn’t have gone into that lake,” said Clarence Carr. “We want other parents to be informed. We don’t want any other child to endure this.”
The family is encouraging people to reach out to their lawmakers and agency leaders to demand changes for the safety of South Carolina families.
“Jaysen was a fighter,” Bailey remarked. “Now, his legacy will be a fight for something bigger—safety, awareness, and change.”
Dominion Energy responded to the press conference.
“We are deeply saddened by the tragic loss of Jaysen Carr and extend our heartfelt condolences to his family and others during this incredibly difficult time. Public health agencies note that naturally occurring microorganisms are found in freshwater lakes and rivers and other unchlorinated water sources, but such tragedies are rare. We encourage everyone to follow safety guidelines from health agencies when participating in recreational water activities,” said Rhonda Maree O’Banion, Director of Media Relations for South Carolina.
