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They found out when a doctor, in tears, told them the diagnosis after what seemed like a fairly regular headache and nausea took a serious turn.

Jaysen, 12, fought for a week before dying on July 18, making him one of about 160 people known to have died from the amoeba in the U.S. in the past 60 years.

As they grieve their son, the boy's parents said they were stunned to learn South Carolina, like most other U.S. states, has no law requiring public reporting of deaths or infections from . The lake wasn't closed and no water testing was performed. If they hadn’t spoken up, they wonder if anyone would have even known what happened.

“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," Clarence Carr told The Associated Press as his wife sat beside him, hugging a stuffed tiger that had a recording of their middle child's heartbeat.

The best Fourth of July ever

Jaysen loved sports. He played football and baseball. He loved people, too. As soon as he met you, he was your friend, his father said. He was smart enough to have skipped a grade in school and to play several instruments in his middle school band in Columbia.

“He either loved you or he just didn't know you,� his father said. “He was the type of person who could go to a jump park and five minutes later say, ‘This is my friend James.’�

Friends invited Jaysen and his family for the Fourth of July holiday weekend on the lake, where Jaysen spent hours swimming, fishing and riding on an inner tube that was being pulled by a boat.

“Mom and Dad, that was the best Fourth of July I’ve ever had,� Clarence Carr remembered his son telling him.

A headache suddenly gets worse

A few days later, Jaysen's head started to hurt. Pain relievers helped. But the next day the headache got worse and he started throwing up. He told the emergency room doctors exactly where he was hurting. But soon he started to get disoriented and lethargic.

The amoeba was in his brain, already causing an infection and destroying brain tissue. It entered through his nose as water was forced deep into his nasal passages, possibly from one of the times Jaysen jumped into the water. It then traveled along his olfactory nerve into his brain.

The amoeba caused an infection called primary amebic meningoencephalitis. Fewer than 10 people a year get it in the U.S., and over 95% of them die. The last death from the amoeba in South Carolina was in 2016, according to the .

The amoeba is fairly common. There is no science-based threshold for what level of the organism in the water would be safe or unsafe, and it would be difficult to test water regularly, the South Carolina Department of Environmental Services said in a statement.

Researchers are still trying to figure out why the infections are so rare. Some people have been found to have had antibodies, signaling they may have survived exposure. Others may die from brain swelling and other problems without the amoeba ever being detected.

Last year, the CDC started a pilot program of giving infected patients an antibiotic approved for use in Europe that has killed the amoeba in lab studies

The amoeba is found in warm water and the infection is almost always fatal

The amoeba becomes dangerous in water that stays over 77 degrees Fahrenheit (25 degrees Celsius) and for years has been seen almost exclusively in the summer in the southern part of the country. But a few have popped up in Maryland, Indiana and Minnesota, scientists said.

The CDC said 167 cases of the infection have been reported in the U.S. between 1962 and 2024, and only four people have survived.

One infection in a body of water doesn't increase the chances of another infection in the same body of water, the CDC said. The amoeba cannot move from one person to another.

Boys seem most susceptible, but researchers don't know if that is simply because they are more likely to jump and dive into the water or play in sediment at the bottom of lakes.

The amoeba can show up in hot springs, rivers and, on rare occasions, in tap water. That's why doctors recommend using sterile water for cleaning nasal passages with a neti pot.

The only way to be completely safe is to not swim in lakes or rivers and, if you do, keep your head above water. Pinching your nose or using nose clips when diving or swimming can keep water out of your nose.

Parents want others to know the danger from the brain-eating amoeba

As he sat in an intensive care hospital room with his son, Clarence Carr couldn't help but think of all the people on the lake.

He wondered if any of them had any clue about the microscopic danger in that water.

“There are entire families out there on pontoon boats, jumping off, just like our kids were having the time of their lives,� he said. “It very well could be their last moments, and they are unaware of it.�