Titus Strong Foundation supports finding a cure for NEC

RALEIGH, N.C. — The hospitals in North Carolina are often on the cutting edge of research, advancing medicine and treatment options for many illnesses.

The NICU at UNC Children’s Hospital cares for more than 900 babies every year, many of whom overcome more in their first days of life than others do in a lifetime. None of their stories are the same, but all leave a lasting mark.

A couple in Raleigh wants to share their son’s life story in the hopes of raising awareness for a rare disease. Doctors are using his legacy as motivation to find a cure. 

Titus Parker in the NICU at UNC Children’s Hospital while he battled NEC. (Meghan Parker)

“People are always like, is it hard talking about your son? And I’ll always tell them, ‘I’m proud to talk about my son,’” Cameron Parker, the founder of the Titus Strong Foundation and Titus Parker’s father said. “Our story is not for us, our story’s to bring hope and peace to other people.”

Their baby boy, Titus, was born three months early, and he began his fight against necrotizing enterocolitis (NEC) after just three days in the NICU.

“Titus was small. He was just 1 pound and six ounces when he was born, but the way he fought and the way that he battled, it seemed like he didn’t have anything go his way, but he still overcame and I think that inspired us to do the same,” Cameron Parker said.”

For 28 days, Titus showed the world what it means to be a fighter. NEC is an intestinal disease that mainly affects premature babies and can cause parts of the intestine to become infected and die. It takes the life of one baby every single day.

“It’s really hard in itself, knowing that there’s this terrible disease out there that could take your child’s life,” Meghan Parker, Titus’ mom, said. 

She and her husband didn’t know NEC existed before their son was born, but staff in the NICU at UNC are always on alert for symptoms of the disease.

“Necrotizing enterocolitis is one of the most devastating diseases that we see in the NICU. It affects all of us every day. It’s something that we worry about constantly, about our most fragile babies,” Dr. Misty Good, a neonatologist and the Division Chief of Neonatal and Perinatal Medicine at UNC Children’s Hospital, said. 

When Good was a pediatric resident, the disease was even less understood and no significant advancements in research or treatment had been made in decades. She was never able to shake the impact of the disease, however, and chose to dedicate her career to studying it.

Dr. Good checks on some of her tiny patients in the NICU. (Meghan Parker)

Good says a baby with NEC has a 50% chance of survival, and her ultimate goal is never having to tell a parent those odds again.

“For us, it’s not about the amount, it’s about what can we do to speed this up so that we can prevent NEC as soon as possible so that another family doesn’t have to go through what the Parker family has gone through,” Good said. 

With the help of partners like the Titus Strong Foundation, UNC is leading the way in NEC research, aimed at being able to diagnose NEC sooner and discover what causes it. In five months, the Parkers’ Titus Strong Foundation has raised $25,000 for UNC hospitals and is halfway to their goal of donating $50,000 to Good and her team to find a cure for NEC. 

“Every day that I get up, I know that we’re fighting this disease, and my goal is really so that no surgeon has to operate on a baby with NEC, so everyone in the NICU doesn’t even have to worry about it anymore, and that families don’t have to be blindsided by this disease and devastated,” Good said. 

To learn more about the disease, you can check out the Titus Strong Foundation or the NEC Society.