My daughter Matilda was 4 days old when I first heard the term “necrotizing enterocolitis,” and not 36 hours later, we were saying goodbye to our sweet angel. I am so honored to be a part of the Patient-Family Advisory Council with the NEC Society so together we can raise awareness that ensures families aren’t hearing about this phantom disease for the first time at diagnosis and one day build a world without necrotizing enterocolitis.
