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Illinois Becomes the 15th State to Recognize NEC Awareness Month

Illinois joins Kentucky, North Carolina, Virginia, Tennessee, South Carolina, Texas, California, Utah, Colorado, Pennsylvania, New Jersey, New York, Georgia, and Louisiana in recognizing NEC Awareness Day. The NEC Awareness Day Resolution has also been introduced in Congress by US Representatives Mike Thompson, Kevin Kiley, and Morgan McGarvey.

Illinois –Senator Chris Balkema and co-sponsor Senator Don Harmon have introduced a state resolution recognizing May as Necrotizing Enterocolitis Awareness Month and May 17, 2026, as NEC Awareness Day in Illinois. The NEC Society is deeply grateful for their dedication to building a world without NEC.

Necrotizing enterocolitis, also known as NEC, is the most common cause of death in hospitalized premature infants after two weeks of age. NEC causes a severe inflammatory process that can lead to intestinal tissue damage and death, and once NEC is diagnosed, many babies only live for a few hours or days.  

Thousands of babies develop NEC each year, and hundreds of babies die from this complex intestinal disease. Babies born prematurely or with a medical complication, like congenital heart disease, are most at risk of NEC, and babies who survive NEC often have lifelong neurological and nutritional complications. 

The risk of NEC cannot be fully eliminated, and there are not yet sure ways to stop or cure NEC. There is an urgent need to increase research, education, and advocacy surrounding NEC.

Taylor and Dustin with Senator Balkema

Taylor and Dustin led the initiative to introduce the resolution to Illinois alongside five families who have been impacted by NEC in the state.

We are deeply grateful to all the families who have worked with the NEC Society to transform their pain into power by advocating for NEC Awareness in their home state of Illinois.

Our son, Walter, was born on September 30, 2025, 50 days early. In his first days, the doctors told us he was one of the strongest in the NICU. He was progressing so well—his numbers were strong. But on October 3rd, everything changed - he developed NEC and became very sick very quickly. He fought with all his strength, but ultimately his tiny body was just too sick. NEC stole our first and only child—five days, twelve hours, and thirty-four minutes after he entered this world.
Dustin & TaylorParents to Walter Daniel
baby boy Walter in NICU
Our son, Parker, was born more than 17 weeks early in 2013. Considered “22 weekers” , our triplets were given a less than 10% chance of survival. We had already lost our first-born triplet, when at three weeks old, Parker was tragically diagnosed with NEC. While he survived the initial surgery to address the disease, Parker passed away due to complications after 55 days of life. Parker spent nearly two months courageously fighting to stay here, and even though his fight might be over, our fight will continue.
StaceyMom to Parker
Stacey
My daughter, Nora, was born at 23 weeks and 5 days, not because she was sick, but because I was. I developed severe HELLP syndrome, and the only chance for our survival was an emergency c-section. Nora was born on September 1,2021. During her NICU stay, my tiny fighter surprised and thrived. She continued to beat all odds and quickly won over the hearts of her family and the NICU Staff. Nora died on October 4, 2021, just 33 days after we celebrated her miraculous arrival. Nora was diagnosed with NEC totalis and passed away before we could really even figure out what was going on. NEC came and stole my baby so fast. I hope to one day see a world without NEC.
CasseyMom to Nora
Cassey
Our son, Levi Dale Dixon, was born at 31 weeks and 3 days gestation on December 17, 2022, weighing 4 lbs 4 oz. For his first ten days of life, he was called the "boring NICU baby" because he was so strong and healthy. On the evening of December 27, 2022, blood was found in his stool during a diaper change. His care team quickly sprang into action and did everything they could to stop the progression of this illness. Unfortunately, after an attempt at surgery, he passed away in my arms at 7:10 am on December 28, 2022. Since then, our family has worked tirelessly to bring awareness to the realities of NEC and keep the memory of our precious son alive. We pray that one day a cure can be found and no other families feel the pain of a loss like this.
Blayne and Jake Parents of Levi Dale
Blayne and Jake
Mark and Matthew were born prematurely at just 22 weeks and 2 days. Their early arrival marked the beginning of a challenging journey, and unfortunately, NEC became a critical part of it. About a month into their PICU stay, Mark was diagnosed with NEC. Thankfully, due to early detection and the swift actions of his medical team, they were able to intervene. While it was incredibly difficult to watch my tiny baby undergo surgery and manage an ostomy bag, he fought hard and ultimately survived. Matthew’s experience was devastatingly different. By the time NEC was detected in him, the disease had progressed with terrifying speed, and his little body was already shutting down. We lost Matthew very quickly after his diagnosis. It was definitely a journey seeing both sides of a NEC diagnosis outcome. Hopefully with our efforts, more light can be shed on this heavy topic.
MalindaMom to Mark and Matthew
Baker and his twin brother were born prematurely at 32 weeks and 3 days gestation.When Baker was about a month old, he had blood in his stool, which can be a warning sign of NEC. Baker received X-rays and was diagnosed with NEC and became very sick very fast. He needed emergency surgery. The surgeon told Baker’s parents that this was one of the most severe cases of NEC he had ever seen. Baker’s parents were asked to prepare themselves for the devastating possibility that Baker might not survive. Baker made it through his first surgery, but he was not improving. He then endured a hospital transfer and three more surgeries to remove all of the necrotic tissue. Thankfully, Baker survived NEC. Today, Baker is almost one year old. He has some kidney damage, but he is doing well with his loving family. Baker’s mom, Hannah, shares how grateful they are for Baker’s recovery and emphasizes that NEC is terrifying and overwhelming.

Illinois joins California, Colorado, Georgia, Kentucky, Louisiana, New Jersey, New York, North Carolina, Pennsylvania, South Carolina, Texas, Utah, and Virginia in recognizing NEC Awareness Day. The NEC Awareness Day Resolution has also been introduced in Congress by US Representatives Mike Thompson, Kevin Kiley, and Morgan McGarvey. 

Join Illinois and the NEC Society by raising NEC awareness in honor of babies like Walter, Parker, Nora, Levi, Mark, Matthew, and Baker here.

The NEC Society is the world’s leading nonprofit dedicated to understanding and preventing necrotizing enterocolitis (NEC). We are led by patient-families, clinicians, and researchers who share our vision: to build a world without NEC through research, education, and advocacy so that babies and families never have to experience the devastation of NEC.

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