NBC

Cook Children's is 1st US Hospital with Amoeba Infection Drug

As the summer temperatures heat up and more people head to area lakes, there’s a warning for those swimming in warm, stagnant water in North Texas.

Doctors say a water-borne amoeba could enter your brain through your nose and cause symptoms similar to meningitis. But an amoeba called Naegleria fowleri kills more than 90 percent of those who get it.

The amoeba killed 7-year-old Kyle Lewis, of Mansfield, in August 2010. His parents shared their story with NBC 5 as a warning to other parents to be aware that amoeba lives in the warm, stagnant water in area lakes and rivers. 

The Lewis family swam in the Paluxy River, near Glen Rose, as well as Lake Granbury in the days before Kyle lost his life. He started having a severe headache hours after swimming. He died from the infection four days later.

“More often than not, it’s missed because of how fast this acts,” Jeremy Lewis said.

Five to seven children are diagnosed each year, but many more are not diagnosed.

In the wake of Kyle’s death, Kyle's parents made it their mission that other families don’t experience the devastating loss of a child. They created the website KyleCares.com and works to educate parents and medical professionals about amoeba infections and their symptoms.

Jeremy Lewis also worked tirelessly to bring a former cancer treatment drug from Germany onto U.S. soil. He spoke with pharmaceutical companies across the country and world and worked with the Centers for Disease Control and Prevention in Atlanta.

In 2013, the CDC announced that it would maintain a supply of the drug Miltefosine and would dispense it to hospitals on a case-by-case basis. But given how quickly Naegleria fowleri works and kills, the Lewis’ wanted to develop a system of hospitals that would carry the drug.

“We've done a lot of hard work, we're driven by one thing and that's Kyle,” Lewis said. “Kyle is driving this whole thing and we’re very grateful to be able to do what we've done.”

While the drug is by no means a “silver bullet”, as Jeremy Lewis put it, it has been successful in two children so far, in Arkansas and San Antonio. Cook Children’s is the first hospital in the country to receive a stockpile of the drug and can dispense it to other hospitals in the region and nation that may need it. Other hospitals in the network will be in Florida, Louisiana and Minnesota, where amoeba infections are most common.

“Having a medication locally and not having to call the CDC and wait for its response and wait for it via mail can waste precious hours,” said Dr. Warren Marks, pediatric neurologist at Cook Children's.

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