Category: NEC family stories


From Three to One: Giving Birth to Triplets and Losing Two to NEC

Written by, Fannie, the mother of Keaton, Dorian and Aiden.  I always wanted twins. I was 38 years old, and had just married the love of my life. I left my home and my whole life in France – my…

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The Story Behind the Tree of Courage Painting

By Leslie Napolitano, artist of the Tree of Courage, whose grandson died from NEC  My grandson Micah developed necrotizing enterocolitis (NEC) when he was nearly six weeks old, after being born just shy of 28 weeks gestation. Like many babies…

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Becoming an Advocate for My Son

Mom Heather works tirelessly to get her son the care he needs.

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Honoring My Son by Working to Reduce the Burden of NEC

Written by Guy’s mother, Joanne Ferguson, contributor to the Special Interest Group (SIGNEC) in the United Kingdom This picture of my son, Guy, is used to raise awareness of what is possibly the most complex condition that affects premature babies….

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Raising Awareness in Honor of Our Son

Written by Morrison and Dwight’s mother, Heather Driscoll After struggling with infertility for two years and spending thousands of dollars, we were finally pregnant. With twins. After all that pain and suffering, I smiled at the thought of being repaid with…

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Baby Zachary, a 36-Weeker who Developed NEC

Written by Sarah Landry, Zachary’s mother After a few miscarriages and the birth of our oldest son, Jackson, we were thrilled to find out we were pregnant with our second baby boy. My previous pregnancies were not easy and I…

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From Surviving NEC to Studying at NYU

Written by Linseigh Green, NEC Survivor  Why couldn’t I have been born with a more romantic disease? Not that diseases are romantic, but of all the medical conditions, particularly those with long term effects, why was I stuck with the…

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Learning to Live after Losing Leyden

Written by Leyden’s mama, Melissa Dlugolecki There isn’t a day that passes where I don’t wonder what things may be like if I had any idea on the existence of and the severity of NEC. Would my almost-four-year-old be crawling on…

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The Baby Boy Behind Brazil’s Instituto Pequenos Grandes Guerreiros

Written by Tom’s mama, Bia Rosito Antonio Rosito Robyn, our Tom, was born on a cool winter’s day on July 10th, in São Paulo- Brazil. Tom and his twin brother Daniel were born prematurely, after 32 weeks of gestation. Although small,…

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Baby Desmond: a story of survival

Written by Desmond’s mother: Alex Boatright Baby Desmond was born at 29 weeks gestation. Early on he was feisty and strong. We even talked about transferring him to another hospital with a lower level NICU to make room for the…

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