After holiday swimming, our youngster experienced a stiff neck and headache. A brain-eating amoeba killed him seven days later

This as-told-to essay on primary amebic meningoencephalitis is based on a talk with Steve and Shelley Smelski, the founders of the Jordan Smelski Foundation in Florida. This document has been altered for both length and clarity.

On June 26, 2014, while on vacation at a five-star resort in Costa Rica, we spent time at the hot springs. Jordan, our 11-year-old son, tumbled down the waterslide and landed in the beautiful hot spring below, eliciting guffaws from us as we took in the breathtaking vistas and fantastic weather. We believed he got a bit of water in his nose, but other than that, everything was ideal.

The following day, Jordan awoke with a headache. We retrieved Motrin from our travel pharmacy — the medications we brought along in case something similar occurred — and administered it to him. Initially, it appeared to help, but he was unable to escape the anguish. We asked him to rate the severity of his headache on a scale from one to ten. Three days after swimming, he experienced pain ranging from a one to a five; on days four and five, the pain reached a six and beyond. We believed Jordan had a cold, so we returned to Florida, but once there, he began vomiting uncontrollably.

We stayed up all night with him, but he deteriorated rather than improved. On Sunday morning, Jordan had a stiff neck and a worsening headache, so we took him to the emergency hospital, where he was transported to AdventHealth for Children in Orlando. We did not know what it may be, but Jordan had just traveled, gone horseback riding, and been exposed to animals, so we suspected he had contracted a bacterial infection.

Jordan Smelski.

Thank you to Steve and Shelley Smelski

Infected by the brain-eating amoeba Naegleria fowleri, Jordan died of primary-amebic meningoencephalitis, often known as PAM, on July 2, just seven days after swimming. The doctor speculated that the amoeba infected him when water went up his nose in Costa Rica after he rode a waterslide.

Our entire world disintegrated on that day. Jordan was our only child; he was a sweet youngster who enjoyed soccer, baseball, writing, and art. When we took him to the hospital, it never occurred to us that he wouldn’t return home because he was always full of life.

Over the past 50 years, there have been so many medical advancements that we anticipated the physicians to heal whatever was wrong and give us back our spirited boy. We did not foresee that the hospital would not be equipped to save Jordan’s life quickly enough.

Because education and testing could have saved Jordan’s life, we now have a mission to help other children.

When we brought Jordan to the hospital, physicians wrongly diagnosed him with bacterial meningitis. Some of the symptoms are similar, including a stiff neck, severe headaches, and vomiting, but amoeba infections are so uncommon that they are rarely examined. Thus, testing for them is exceedingly limited, and only three states, Florida, Texas, and Louisiana, are compelled to report these illnesses. Even fewer medical personnel are able to identify these infections.

First, the hospital must comprehend how an amoeba affects the body, what its symptoms are, and how these symptoms manifest. Once medical professionals have been educated and trained on the symptoms, they need a rapid amoeba detection method.

Currently, amoeba testing is performed through a lumbar puncture in which spinal fluid is obtained. Most hospitals are able to collect spinal fluid, but without the assays held by the CDC, they cannot confirm a PAM infection. This spinal fluid must then be transported to the CDC for confirmation, which might take up to seven days. However, amoeba infections have a fatality rate of 97% and are typically lethal within five days of the onset of symptoms, though they might take up to 18 days. Every second is crucial.

Because of this, we established the Jordan Smelski Foundation and teamed with AdventHealth to develop speedier diagnostics that medical staff can use to safeguard patients from amoeba infections.

We wished to save other parents from experiencing the same sorrow.

In 2015, with the assistance of AdventHealth for Children, we sponsored the inaugural Amoeba Summit to raise awareness and educate the medical community on amoeba infection and detection. Dr. Jose Alexander, a clinical microbiologist and the director of microbiology, virology, and immunology at AdventHealth Orlando, and his team have developed a reliable test that detects for all three amoeba variants within five hours.

Even the CDC’s test is insufficient; it recognizes only one type of amoeba, Naegleria fowleri. The laboratory test conducted by Alexander has been internally validated, completing rigorous testing and quality-control procedures that do not require FDA approval. Next year, he hopes to deliver the test at a medical conference.

Is it uncommon or underdiagnosed?

Our foundation’s primary objective is to save lives, and the best way to accomplish this is by investing in research and early detection. The difficulty we face is that PAM is classed as a rare condition, yet it may not be that uncommon.

PAM is frequently misdiagnosed by doctors as bacterial meningitis, as it was in Jordan’s case, or it is never tested for by medical personnel. This means that more parents are losing their children unnecessarily, which is something we wish to prevent.

Additionally, rare diseases do not receive funding for research. If we can assist in gaining an accurate understanding of amoeba infections, additional research can be conducted.

What parents must understand

Amoebas inhabit a wide variety of temperatures in freshwater. They can be found in drinking water, rivers, lakes, hot springs, and swimming pools. Take children to the hospital promptly if they develop a headache, fever, nausea, or vomiting within a few days of swimming, playing in bodies of water, cleaning their hands with tap water, or taking a bath.

There is insufficient time to wait and hope that it disappears. Time is not on your side until the test is available in all hospitals and more medical professionals are aware of the symptoms. The longer you have to catch it, the better chance your child has of surviving.