Kelsey McClain celebrated her birthday at Fisher’s Landing in August.
It took a lab to discover she contracted a brain-eating amoeba when she was in the Colorado River.
And it may take another lab to stumble upon a cure.
“Losing somebody this close to you, a child, the pain is incredible,” said Jennifer McClain, Kelsey’s mom.
Doctors suspected bacterial meningitis -- until a lab at UC San Diego found the amoeba after Kelsey was brain dead. Contracting the deadly brain-eating amoeba is rare -- 133 cases in 50 years. Three survivors.
Only Miltefosine, a drug being developed to fight breast cancer, has shown some effectiveness against the amoeba -- called Naeglaria fowleri. The amoeba is found in freshwater, like hot springs and rivers. It enters through the nose.
Dr. Jeffrey Engel, who runs an agency that maintains a list of "nationally notifiable diseases" and works with the CDC to recommend which diseases authorities should be made aware of when a new case arises, says Zika was just added to the list of about 70 "nationally notifiable diseases." The Naeglaria Fowleri amoeba won’t make the cut.
So, what's the problem? Why won't the amoeba responsible for Kelsey McClain's death be put on the list?
“Just like other things that are such a rare or small risk, there’s not a lot of attention paid to it, there’s not a lot of resources dedicated to it,” said Engel, executive director of the Council of State and Territorial Epidemiologists.
Engel says the economics aren’t there, that no drug maker will spend the money to find a cure for a disease that’s only on record as claiming 133 lives.
“The companies see that there’s no market there,” he said. “The drugs take a hell of a lot of money to bring to market, and with a rare infection, it’s just not feasible for them to do.”
So, just what is the intervention? What should people do to avoid contracting the brain-eating amoeba?
The CDC recommends not going into bodies of freshwater. For those who do venture in, the CDC says they should wear swimmers nose clips, available for about $4.
"We would never close all fresh water swimming areas," says Engel, "that would be impossible.”
Kelsey's mom, Jennifer McClain says it’s a reality she's come to know, all too well.