A 10-year-old girl has died after her family says she contracted a brain-eating amoeba while swimming in a river near her home in Central Texas.
Lily Avant, of Whitney, died nearly a week after doctors confirmed she had contracted Naegleria fowleri, a "brain-eating" amoeba found in fresh water bodies such as ponds, lakes and rivers, her mother's cousin Wendy Scott confirmed Monday to NBC 5.
Scott thanked everyone for their "love and support" and asked that the "country continue to pray for our family."
"Our Lily Mae changed lives and brought unity to a divided nation. It's just like her," Scott said.
Her family said Avant had gone swimming in the Brazos River with dozens of others over the Labor Day weekend. About a week later on Sept. 8, she started suffering from a fever.
Scott said Avant saw a doctor that night.
"They got it checked out. There were several viruses going around the school. It was assumed it's a virus because of the symptoms are exactly the same, so she was sent home," Scott said. "She was brought into the emergency room on Tuesday when she woke up unresponsive. She was eyes open, she was there, but she wasn't speaking. Nothing."
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The young girl was eventually transferred to Cook Children's Medical Center in Fort Worth where a spinal tap confirmed Avant had contracted Naegleria fowleri – commonly referred to as "the brain-eating amoeba."
According to the CDC, it is known to cause a brain infection known as Primary Amebic Meningoecephalitis or PAM. The amoeba is typically found in warm freshwater and soil, usually infecting people when contaminated water enters the body through the nose.
Once it enters the nose, it travels to the brain where it causes PAM.
It is almost always fatal, according to the Texas Department of State Health Services. In total, there are five documented cases of survival – four in the U.S. alone.
The CDC reports those who are infected die one to 18 days after symptoms begin, the median being five days.
The Texas Department of State Health Services said while the amoeba itself is common, the infection is extremely rare.
"We average less than one per year in Texas. However, it is extremely serious and almost always fatal. Since it's so rare, we don't know why a few people get sick while millions who swim in natural bodies of water don't," an agency spokesperson explained. "Because the organism is common in lakes and river, we don't recommend people specifically avoid bodies of water where people have contracted the illness."
Avant had been in a medically-induced coma while doctors treated swelling in her brain, her family said.
Before she died, John Crawson, Avant's father, spoke at a prayer vigil Friday evening outside Cook Children's Medical Center. He called his daughter "a fighter" and said she's "stronger than anybody I know." Others described her as "sassy" and a "tomboy."
Through Avant's battle, her family said they've found a new friendship through Jeremy and Julie Lewis. They lost their son Kyle to PAM in 2010 when he was just 7 years old.
The Lewis family received a message about Avant's fight last week and supported Lily's family in the hospital, as they held out hope Lily would survive.
"We both looked at each other before we actually went to the hospital, saying we have got do this," Jeremy Lewis said. "Kyle has been pushing us for nine years."
Following their son's death, Lewis created the Kyle Lewis Amoeba Awareness Foundation with the goal of informing families of the potential danger of Naegleria Fowleri. Their hope is to save lives and heartache through education and awareness, the family said.
Their foundation has pushed for hospitals to stock a drug called miltefosine, which can help treat the illness. The Lewis family said it's now in 22 hospitals, including the hospital that treated Lily.
But treatment has to be timely. The foundation is also raising money to help the CDC develop a rapid detection test to catch PAM before it's too late.
The Lewis family said they're working to educate parents on taking precautions when swimming in fresh water lakes, rivers and ponds. Use nose plugs or a mask to keep water from entering the nose. If a child falls ill with a fever, nausea or vomiting after swimming in fresh water, parents should move quickly to get help.
"Take him to the ER and tell them know you were in fresh water and don't give that up until they think about that amoeba," Jeremy Lewis said.
"Losing Kyle has been the worst thing ever," Julie Lewis said. "We're getting through that and we'll keep getting through these. We just don't want anyone else to hurt."
"It is about how fast you can get your child to the doctors. It is about mothers who can sit there and say, 'My child has this,' and a doctor doesn't discount what she's saying," Jeremy Lewis said.
There are accounts set up to take donations to assist Lily's family. Contributions can be made at First National Bank in Valley Mills and First National Bank in Whitney.
What to Know About Primary Amebic Meningoencephalitis (PAM): CDCWhat is it? You cannot get infected from swallowing water contaminated with Naegleria. In rare instances infections can occur when contaminated water enters the nose through either inadequately chlorinated swimming pools or contaminated tap water that is heated.
What are the symptoms?
How do you prevent infection?
What should I do if I believe I'm infected? More Information: CDC | NCDHHS
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NBC 5's Diana Zoga contributed to this article.
