Aug. 29th marks the “angelversary” of the passing of then 7-year-old Kyle Gracin Lewis. 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 week right before school started.

The Lewis family clings on to those moments now before their little boy became ill and passing at Cook Children’s Medical Center from Primary Amoebic Meningoencephalitis (PAM), which was caused by the water-born amoeba Naegleria fowleri.

Since Kyle’s passing, his parents and his sister Peyton have become passionate advocates to make people aware of brain-eating parasites that are common in fresh, warm water. In 2010 the Lewis family started the Kyle Lewis Amoeba Awareness Foundation, aka Kyle Cares, with the goal of informing families of the potential dangers which exist in most freshwater.

In 2016, the family helped to make Cook Children's the first hospital in the nation to house a life-saving investigational drug called miltefosine. Timing is so critical when it comes to this amoeba and trying to save a life and Kyle Cares was instrumental in getting that potential life-saving drug into many hospitals around the country in hope that when the need arises, that medication could be more readily available.

“It’s always difficult this time of year, especially when you hear of more cases,” Jeremy Lewis, Kyle's dad, said. “Those reports hurt. It’s like the wounds are open again.”

“We hope that we can help other families not go through what we did with the passing of Kyle,” Julie Lewis, Kyle's mom, 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.”

Just this past May, Kyle’s sister Peyton graduated from high school and in August she will be off to Tarleton State University to begin her journey to become a Child Life Specialist and it’s all because of the wonderful Child Life Specialists at Cook Children’s that cared for her and her brother during those days back in 2010. “We were grateful then for the care that was poured into our children by these wonderful ladies and they made such an impact on our daughter that we are all looking forward to her pursuing this certification, so she can be that special person to many children” states Julie.

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

According to the CDC, “only 4 people in the US out of 143 (diagnosed) have survived infection from 1962 to 2016. Signs and symptoms of Naegleria fowleri infection are clinically similar to bacterial meningitis, which lowers the chances of initially diagnosing PAM”.

Texas health officials say:

• From 1984-2013 (30 years) there were 28 cases of PAM reported to the Texas Department of State Health Services, just under one case per year.
• Most cases occurred in young males, 9-12 years of age, with a history of recent exposure to freshwater lakes, ponds and rivers during the warm summer months.

Mary Suzanne Whitworth, medical director of Infectious Diseases at Cook Children’s, 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 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 progress is being made in treating children who are infected by these dangerous parasites. But until a cure has been found, the most important thing is to be extremely careful if you are in fresh, warm water.

Related to this topic:

www.KyleCares.com

New hope in fight against deadly brain-eating amoeba

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.”