Fort Worth, Texas,
08:54 AM

New hope in fight against deadly brain-eating amoeba

Cook Children’s becomes first hospital to carry promising drug

Kyle Gracin Lewis died at Cook Children’s Medical Center in the summer of 2010, from the Primary Amoebic Meningoencephalitis (PAM), the brain infection caused by the water-born amoeba, known as Naegleria fowleri.

Now Cook Children’s is the first, and currently the only, hospital in the nation to house a life-saving investigational drug called miltefosine (trade name, Impavido) that could prevent other children in the state of Texas and surrounding states from meeting a similar fate.

Miltefosine is an oral drug encased in a blister pack. Until recently, miltefosine was only available through the Centers for Disease Control and Prevention (CDC) and had to be shipped to hospitals on a patient-by-patient basis. Having miltefosine on hand at Cook Children’s means patients will not have to wait for a shipment to arrive, increasing their odds of survival. It also means quicker access to the drug for hospitals across Texas and the region.

The drug, originally created to treat leishmaniasis (a rare tropical parasitic disease), was administered successfully to a 12-year old Arkansas child in 2013, who had been diagnosed with PAM.

After reading about that child, Jeremy and Julie Lewis’ foundation, Kyle Cares, contacted the drug manufacturer about making the drug more widely available across the nation. Five “source hospitals” have been chosen across the nation to have miltefosine readily available at their hospital. Cook Children’s is the first source hospital to have the drug onsite.

“It means so much to us that Cook Children’s has this drug today,” Jeremy Lewis said. “In the worst case for us, Kyle passing away, Cook Children’s could not have been better to us. I’m glad it will be the home for miltefosine in the state of Texas.”

Rosanne Thurman, director of Pharmacy, was not at Cook Children’s when Kyle died, but she was immediately touched by the passion of his parents.

“For this family to go through such a tragedy and then to go the extra mile like they have to make sure other kids will have this drug, it really touched my heart,” Thurman said.

After doing the research on the drug, Thurman contacted Mary Suzanne Whitworth, M.D., Cook Children’s medical director of Infectious Diseases. Although the cases like Kyle are rare, she didn’t hesitate to say she wanted the drug at Cook Children’s.

Aug. 29, 2016, marks the “angelversary” of the death of their then 7-year-old son. Kyle spent the week being the outdoorsy little boy he was – swimming, fishing, boating and camping in Lake Granbury and the Paluxy River near Glen Rose, Texas. A perfect family weekend right before school started.

The Lewis family clings to those moments now before their little boy became ill and died.

Since Kyle’s death, his parents and their 16-year old daughter Peyton, have become passionate advocates to make people aware of brain-eating parasites that are common in fresh, warm water.

The Lewis family started the Kyle Lewis Amoeba Awareness Foundation with the goal of informing families of the potential dangers which exists in most freshwater.

“We hope that we can help other families not go through what we did with the death of Kyle,” Julie said. “We simply didn’t know the dangers. Our hope is we can save other families from going through the heartache that we went through then and continue to do so now.”

For many Texas kids, the summer means time for fun activities such as fishing, swimming and water skiing. Unfortunately those staples of summer could, in rare instances, also lead to serious health complications.

Dr. Whitworth says that children who spend time in still water run the greatest risk of the life-threatening parasite, entering their bodies. The dangerous amoebas are usually found in warm freshwater, such as lakes and rivers, but they could be in any standing body of water, including creeks or even puddles.

“Once a child is infected, everything happens very quickly,” Dr. Whitworth said. “We try our best to save the child’s life, but the parasites rarely respond to medications and are very difficult to treat. The infection tragically results in death almost uniformly.”

Use caution when swimming in fresh warmer water, especially in stagnant water. Naegleria fowleri grows best at higher temperatures from 80 degrees Fahrenheit up to 115 degrees (46 degrees Celsius) and can survive for short periods when the temperature rises even higher.

Do all you can to limit the amount of water going up the nose. Your best option is to keep your head above water, but you can reduce the chance to getting these infections inside the body by wearing nose plugs.

Dr. Whitworth says miltefosine has saved the lives of two children in the United States infected by these dangerous parasites.

“Prior to using miltefosine the infection was uniformly fatal, so this has given everyone great hope,” Dr. Whitworth said. “But no one knows if it will work every time and until a definitive cure is found, the most important thing is to be extremely careful if you are in fresh, warm water.”

Comments 1 - 4 (4)
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Lared Lynott
What a gorgeous child.
It’s true that heaven gained a beautiful angel on August 29, 2010
I’m SOOOO SORRY FOR THE LOSS OF YOUR BEAUTIFUL SON!!! I watched a broadcast on tv and cannot imagine your heartache. My heart goes out to you and your family.
Derik Ashworth
Knowing that an amoeba like this could survive in any non-chlorinated body of water is shocking. Kyle’s smile was absolutely amazing and I can tell, despite never even meeting him, that he was a very compassionate child. Rest In Peace little boy.
Rachel Ryan
Kyle Gracin was such a cute child, so full of life and however passed. I have to give credit to his parents because they are founders of Kyle Cares, beautiful son gone too soon. If anything has to be said about Kyle then it will be that his smile was priceless and there is no doubt in my mind that if he did not contract this disease that he would get on in life. RIP Kyle.