Family raises awareness for debilitating disease in babies

COLUMBUS, Ohio (WCMH) – It’s a complex disease that researchers are still trying to understand – one that kills thousands of infants every year.  

That disease is called NEC or necrotizing enterocolitis and is an intestinal disease that primarily affects premature or medically frail infants. 

May 17 is NEC Awareness Day and it’s a day designed to spread awareness about the often fatal condition and work to find a cure. 

Roland Tokarski is the Father of a NEC baby. He tells NBC4, in 2004 his son was born six weeks premature and within hours his health began to deteriorate. 

“He peed straight blood. I remember looking at the nurse and she looked at me and gave me that look that it was not very good,” Tokarski said. 

Doctors determined he had NEC and was sent to surgery to remove a majority of his large intestine. Over the next several years came more surgeries and challenges. 

Ultimately ‘Rolly’ as they lovingly call him began to thrive. Two decades later, his family is aware how his story could’ve had a different ending. 

“We’re just one story of many many kids,” he said. 

Chris Smith works with the Mother’s Milk Bank through OhioHealth. Her inventory is crucial in fighting the chance of NEC. 

“Humans’ milk is the only thing that reduces the risk of necrotizing enterocolitis,” Smith said. 

While the push for research on NEC continues and the call for breast milk continues – so does the desire to spread awareness about a disease that can change a family’s life in an instant.