Moss Pieratt was 15 months old when he took a nap and never woke up. His death was categorized as a Sudden Unexplained Death in Childhood — a phenomenon that eludes scientific understanding (Photo courtesy: Chelsea Jenkins Myers)

AUSTIN (KXAN) — In 2014, J. Pieratt and his wife, Jessica, experienced every new parent’s nightmare – they found their firstborn son, Moss, unresponsive following a morning nap. 

Moss was 15 months old, and after his parents rushed him to Dell Medical Center, he passed away later that afternoon. 

“He simply fell asleep to take his nap and never woke up,” Bobby Jenkins, Moss’ grandpa, said. 

Sudden Unexplained Death in Childhood

What happened to Moss is considered a Sudden Unexplained Death in Childhood or SUDC. This is when a child between the ages of one and 18 dies, and the cause of death remains a mystery, even after a complete investigation is conducted. Often, in these cases, a seemingly healthy child goes to sleep and never wakes up. 

In 2018, there were nearly 400 SUDCs in the country, according to the rare disease database. The majority of the cases occurred in children aged one to four. In 2020, 204 toddlers in that age range died under this criteria, according to the SUDC Foundation. 

These deaths continue to elude scientific understanding, and there is a lack of awareness and research on it, according to the rare disease database. 

The Moss Pieratt Foundation 

It took a while for Jessica and J. to process their grief. But after some time, they turned their heartache into activism. 

“We were eventually put in touch with the Sudden Unexplained Death in Childhood Foundation, which is a foundation of other families that have experienced similar tragedies,” J. Pieratt said. “A lot of the fundraising that goes into SCDC support is done by these individual families who have lost children at that age.”

The couple, with the support of their families, started the Moss Pieratt foundation to bring awareness to SCDCs and raise funds for further research on it.

“The challenge is there’s no government funding for this,” Jenkins said. “All the funding that takes place is from families like ours across the country to fund the research.”

“It’s slow going,” he continued. 

But slow and steady will hopefully win the race. And not just for fundraising.

This weekend, Jenkins and Pieratt will run the New York City marathon to honor Moss and raise money for the charity. 

“At my age, it’s been quite an endeavor but a labor of love, for sure,” Jenkins said. “I’m very excited about it.”

Bobby Jenkins and his grandson, Moss Pieratt. (Photo courtesy: Chelsea Jenkins Myers)

This marathon isn’t the first time Jenkins has undertaken a physical challenge to raise awareness and money for the charity. Five years ago, he rode his bike from Seattle, Washington, to New York City and raised over $400,000 for SUDC research in the process.

Most of the funds go to the New York University Langone Heath, one of the only research centers that studies the phenomenon. 

In addition to fundraisers, they have organized movie nights, concerts and other events around Austin. 

“Over the last six or seven years, the Moss Pieratt foundation has probably raised close to $800,000,” Jenkins said.

“We want people to know about it. We want it to kind of be more at the forefront of the (public) conscious,” Pieratt said.

If you would like to donate to SUDC research, click this link.