NEED TO KNOW
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Jaysen Carr, 12, died July 18 from Naeglaria fowleri, a brain-eating amoeba that thrives in warm freshwater
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His parents said they were unaware that it lived in Lake Murray, where Jaysen swam and engaged in other water activities over the Fourth of July weekend
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According to the Centers for Disease Control and Prevention, the amoeba is rarely contracted, but nearly always fatal
The parents of a 12-year-old boy who died this month from a brain-eating amoeba at a popular lake in South Carolina say they want warnings to be put in place to prevent similar tragedies.
Clarence and Ebony Carr of Columbia, South Carolina, said they were unaware brain-eating amoeba, Naeglaria fowleri, lived in Lake Murray, where their son, Jaysen, spent time fishing, swimming, boating and tubing over the Fourth of July weekend.
Jaysen died on July 18 after being hospitalized for a week and a half from the amoeba, which has killed 163 people between 1962 and 2024 in the U.S., according to the Centers for Disease Control and Prevention.
Prisma Health Children’s Hospital in South Carolina confirmed that Jaysen died from Naeglaria fowleri.
“We’re still in shock about how all this happened,” Ebony said at a news conference Tuesday, where she and her husband spoke publicly for the first time since their son’s death. “Had he known the risk, had we known the risk of him swimming in that lake, nobody would have ever chosen to get in.”
“We definitely want the public to know that there are major risks swimming in Lake Murray,” Ebony said. “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.”
Dominion Energy, which owns the lake, did not immediately return a request for comment.
“A child should not have to lose their life for doing something they assume was safe,” Clarence said. “They should not have to double-check to see if they are going to live or die from being a boy. He had a weekend full of fishing, swimming, boating, tubing. That’s it. That’s all he did.”
Clarence said a few days after the visit to Lake Murray, Jaysen complained of a headache. His parents gave him over-the-counter pain medicine, which seemed to make him feel better.
But the next day, Jaysen complained of the same headache, so they took him to the hospital. There, Jaysen told emergency room doctors where exactly he felt pain — on the right side and front of his head and in his left eye.
“In hindsight, 2020, this was no headache. He was being attacked,” Clarence said, adding that doctors put Jaysen on antibiotics and performed a spinal tap to rule out meningitis.
“From there, things just kind of progressively got worse,” he said. “Jaysen was still responding, but he became more and more lethargic as time went on.”
According to the CDC, Naeglaria fowleri lives in soil and warm freshwater lakes, rivers, ponds, and hot springs. If water containing the amoeba goes up the nose and to the brain, it can cause an infection called primary amebic meningoencephalitis, which destroys brain tissue and causes brain swelling and death. Typically, fewer than 10 people get it a year in the U.S., and nearly all of them die, the CDC says.
Jaysen exhibited some of the early symptoms of the infection, which include headache, fever, nausea and vomiting.
At the hospital briefing, Anna-Kathryn Burch, a doctor of pediatric infectious diseases, said the amoeba is “ubiquitous to any fresh water in the state of South Carolina” and in the Southeastern part of the country. For most people who come into contact with this type of amoeba, she said, “it causes no harm whatsoever.”
As the weather heats up, the number of amoeba in the water increases while water levels decrease, Burch said, adding, “Most of us have been exposed to this amoeba.”
Jaysen was the couple’s middle child and was very protective of his older sister and younger brother.
“He truly had the gift of love, compassion, the athleticism and that big smile that everybody loved about him,” Ebony said.
A bright student, Jaysen skipped a grade in school, his father said, and played baseball and football, as well as multiple instruments, and was a member of his school’s honor band.
“I never heard Jaysen say he liked someone,” Clarence said. “He either loved you or he just simply did not know who you were.”
According to the CDC, Naegleria fowleri infections are most often contracted by swimming, but can also occur if a person uses contaminated drinking water to cleanse their nasal passages. The CDC says the only way to prevent an infection is to avoid water-related activities in warm freshwater. If you do swim in rivers or lakes, the CDC advises, hold your nose shut, use nose clips or keep your head above water
In a statement to PEOPLE, the South Carolina Department of Environmental Services said:
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. The CDC doesn’t recommend testing untreated recreational water or posting signage for Naeglaria 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.
The agency said it “monitors ambient water bodies for certain bacteria that have federal and state recreational water standards,” noting that such standards do not exist for Naeglaria fowleri .
Read the original article on People
