To help parents, babies and the medical world raise awareness and find cures for newborn and premature diseases and conditions with a primary focus on ending NEC (Necrotizing Enterocolitis) which is the disease that took our son Grayson.
What is NEC?
Necrotizing Enterocolitis is an intestinal disease that primarily affects premature infants. Inflammation and infection can occur. This in turn can destroy the bowels by causing perforations in the walls of the intestines. This can lead to sepsis and infant death. NEC affects nearly 10% of all very low birth weight infants. The mortality rate can be 50% depending upon the severity of the disease.
Our son, Grayson Edward Kapferer was born at 12:05am on the 7th of February, 2012 at Beth Israel Deaconess Medical Center in Boston, Massachusetts. Grayson was premature by 6 weeks, being born at the 34 week mark exactly. He was a growth restricted baby weighing in at only 2 pounds 14 ounces. But even though he was small, he was perfect in every way. He excelled in his progress as he developed in his first week of life. He was breathing completely on his own, was feeding from a bottle, was gaining weight and even got to the point of regulating his own body temperature. He was a fighter. Toward the end of his 6th day here, he began to show some signs of distress, eventually presenting with a large bruise on both sides of his abdomen. NEC (Necrotizing Enterocolitis) was the diagnosis. NEC attacks the walls of the intestines, eventually breaking through to cause sepsis. Grayson's blood had also stopped clotting causing him to need transfusions. He was given antibiotics and blood transfusions to no avail. He was transferred to Children's Hospital Boston where they did everything they could to help. But, in the end we made the decision to let him pass peacefully. The time was 2:19pm on the 14th of February, 2012 (Valentine's Day). We had him for 7 days and would not give that up for the world. There are currently no decisive methods for early detection of this Disease. There is no definitive cure, means of prevention or vaccination against NEC. Many groups and doctors are currently researching and doing all they can to combat this horrible Disease. We are here to do everything we can to help them. No parent should ever have to lose their child, Especially not in a way that somehow could be prevented. Please join Team Grayson and all its allies in the fight to cure this Disease and end Necrotizing Enterocolitis for good.
- Dr. Seuss
Meet Our Team!
Director of Technology