‘Amoeba does not discriminate’: Livingston County family hopes to raise awareness for deadly disease after son’s death

MOUNT MORRIS, N.Y. (WROC) — Debra Moffat told News 8 her six-year-old son Aven was always looking for the next adventure.

“He was very into sports. He loved soccer and baseball, and he was on the swim team. He loved being outside. He loved frogs. He loved catching frogs. He had the biggest imagination,” Moffat said.

In August 2021, on one of those typical adventures:

“We were having a fun summer day with our family. Out enjoying the beautiful weather, and [Aven] was swimming, and one of those times when he jumped in the water, the water went up his nose and he got sick,” Moffat said.

The symptoms started about a week after. Aven first complained of a headache. As those symptoms worsened, Debra and her husband thought maybe it was COVID-19. But in the end…

“Aven contracted an amoeba named Naegleria fowleri, and it’s a very rare amoeba,” Moffat said.

Moffat said everything happened so fast. She said she and her husband had never even heard of the illness before and immediately did some research.

“The amoeba is only found in freshwater ponds, rivers, lakes, hot springs, and you can contract it just by swimming in the water going up your nose,” Moffat said.

Aven passed away that same month on August 13, 2021. Just days after his diagnosis.

“The amoeba does not discriminate. It does not discriminate based off of age, gender. They do believe that typically young boys are more infected, but that’s just because of the nature of young boys,” Moffat said.

Moffat told News 8 through her research, which was limited, there was not much on diagnosing and treatment, but she did find that 99 percent of cases are fatal, but more importantly, 100 percent are preventable.

“The only way to protect yourself is just to keep the water from going up your nose. So if you are going to allow your loved ones to swim in fresh water, to plug your nose, to wear nose clips, things like that, another big thing is under chlorinated pools,” Moffat said. “If the chlorine level is appropriate, then you jump in and swim, and if not, you don’t want to let your loved ones in.”

Turning tragedy into spreading awareness, Debra launched the Amazing Aven’s Quest for Amoeba Awareness Foundation.

“We’ve realized that, unfortunately, with a lot of these rare diseases, there’s not funding until so many people have passed away,” Moffat said. “And so, we have since funded four very large grants around early diagnosis, around new treatments, and just around amoebas themselves.”

On Saturday, September 21, Debra with the help of her family will host their annual fundraiser to continue raising awareness: A Cowboy Extravaganza.

“We’re just trying to get that word out there about safety and how to swim safe and how to protect their loved ones,” Roberta Partridge, Debra’s aunt said.

For more information on Saturday’s event, and to learn more about the Amazing Aven’s Quest for Amoeba Awareness Foundation, click here .

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