Local family pushes awareness of common brain-eating amoeba in years after daughter's death

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While a day spent on the water should be a relaxing escape from the heat, for some people, summer fun can quickly turn into their worst nightmare.

This was the case for Laci Avant, who lost her 10-year-old daughter, Lily Mae, to a brain-eating amoeba in 2019 after swimming in the Brazos River that flows through their Waco-area backyard.

“We don’t want to scare anyone from being in the water. Lily loved being in the water,” her mother, Laci Avant, said. “We want people to know the dangers of being in fresh water.”

The culprit in Lily Mae’s death is a common freshwater pest, Naegleria fowleri. Ongoing hot and dry conditions only work in favor of the heat-loving amoeba having a presence in Waco’s water this year, with two cases seen in the United States already this summer. The country records about three infections caused by the amoeba each year, but almost all are fatal, according to the U.S. Centers for Disease Control and Prevention.

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“It’s not a pain or a heartache you ever want to live with,” Avant said.

Naegleria fowleri is an amoeba commonly found in underwater soil and in warm fresh water across the world, especially in shallow, stagnant water.

Lake Waco is the lowest it has been in almost a decade, and water temperatures could be as high as 80 degrees, said Mike Champagne, Lake Waco manager for the U.S. Army Corps of Engineers.

“We’re more than 8 feet lower than we were before, so it definitely changes the conditions,” Champagne said.

Naegleria fowleri infection only happens when contaminated fresh water enters through the nose. This allows the amoeba to migrate to the brain via olfactory nerves in the roof of the nasal cavity, giving it the nickname of the “brain-eating amoeba.” Infection causes primary amoebic meningoencephalitis, a disease that affects the central nervous system once the amoeba reaches the brain.

The amoeba cannot live in salt water and does not infect people if it enters through the mouth or ears.

However, in rare instances, infections have been traced to nasal rinses using drinking water without secondary treatment, said Vaidehi Shah, senior epidemiologist for the Waco-McLennan County Public Health District. She encourages people to only use filtered water if water must enter the nose.

With an infection that boasts a 97% fatality rate, Shah said swimmers in the area should always assume there is a small risk.

“The temperature is so high this summer and for such an extended period of time,” Shah said. “It provides a good environment for the amoeba to thrive.”

Shah said the most common way people are infected with the amoeba is by swimming or diving in untreated fresh water, including lakes, rivers and streams, without using a nose plug. Avant said the amoeba could even be present in improperly treated pools and splash pads.

According to the CDC, almost half of all recorded infections in the U.S. happened in Texas and Florida, common places for families seeking relief during brutal summers. Avant and Shah both said more cases are popping up in northern states as well. Shah said this could be a result of changes in the climate, causing northern bodies of water to be hotter than in the past.

“With our current climate conditions, unless you know the temperature is very, very low, there’s always a risk,” Shah said.

Avant said she hates that officials refer to the disease as “rare” and believes many cases are misdiagnosed and mistreated, leading to false case reporting. The CDC reports the disease is hard to detect because it progresses rapidly and only a few labs have the necessary tests. While diagnosis is difficult in time to inform treatment, about 75% of cases are diagnosed after a patient’s death, according to the CDC.

Early detection

Early symptoms are comparable to meningitis and include headache, fever, nausea and vomiting. Later symptoms may include seizures, hallucinations and coma. Avant said her daughter started seeing symptoms five days after exposure to water.

Physicians in the area did not know what was happening to Lily Mae, prompting Avant to take her daughter to Cook Children’s Medical Center in Fort Worth, where they finally took a sample of spinal fluid, necessary to test for the amoeba. According to Avant, early detection is key to survival, and doctors should know what to look for.

“Doctors didn’t know anything about it. Then when Lily got to Fort Worth and they did the spinal tap it was too late,” Avant said.

According to the CDC, only four people survived primary amoebic meningoencephalitis in the United States between 1962 to 2021. It also states the most effective route of treatment has been with a drug called miltefosine in combination with therapeutic hypothermia, a technique used to cool the body below a normal temperature and reduce brain swelling.

The treatments work best with early detection and immediate administration. However, Avant said many hospitals do not have the medication on hand, another hurdle in the battle against time.

Although Lily Mae eventually received both treatments, the medication was not readily available at diagnosis.

“That’s one of the main reasons why we advocate for this,” Avant said. “We want all hospitals to know what to look for. … If the medication isn’t administered in time there’s really no chance.”

#Lilystrong

Now Avant advocates for amoeba awareness through her Facebook group, Lily Strong Family #Lilystrong, and cautions all fresh water users to be safe. Avant said during the summertime she gets calls at least once a week from people who believe they or someone else has been infected.

“We don’t want to scare anyone from being in the water. Lily loved being in the water,” Avant said. “We want people to know the dangers of being in fresh water.”

Lily Mae’s family poses with a photo of her, many sporting #LilyStrong T-shirts referring to their advocacy for awareness of Naegleria fowleri’s risks. 

Front row, from left: John Crawson (father), Laci Avant (mother)

Back row, from left: Chris Sproles Jr. (uncle), Webb Pierce (uncle), Lesha Sproles (grandmother), Chris Sproles Sr. (grandfather), Janika Sproles (aunt), Whitney Pierce (cousin), Tony Avant (uncle)

Considering the heat and drought many places in Texas are experiencing, Avant said the only true way to protect yourself is by staying out of fresh water entirely.

But there are safer ways to enjoy the water, she said.

If it is unavoidable or someone is willing to take the risk, Avant said swimmers should keep their head above the water and use a nose plug.

“Especially with as low as everything is and as hot as it’s been — nose plugs,” Avant said.

Shah also said nose clenching and nose plugs as essential for anyone going in untreated fresh water at any time. Both Shah and Avant said there is always a risk when entering fresh water.

The Texas Commission on Environmental Quality even suggests avoiding disturbing the sediment in shallow, warm freshwater areas, as the amoeba lives in the soil as well.

Anyone who starts seeing symptoms of primary amoebic meningoencephalitis should alert a doctor immediately and tell them they were in fresh water, Avant said.

“Don’t think that it can’t or won’t happen to you, because it’s happened to us and so many others,” Avant said.