ALBANY, Ga. (WALB) — A Leesburg mother hosted an awareness walk at Tift Park in Albany to educate families about the rare disease that took her premature daughter’s life.

LaJuana Grant founded Harper’s Fairy Foundation in 2024 after her daughter Harper died at just 8 days old from necrotizing enterocolitis (NEC). Experts say it is a devastating intestinal disease that primarily affects premature and medically fragile newborns.

WALB previously reported that the foundation began with monthly gift basket deliveries to families with infants in the neonatal intensive care unit.

Grant hosted the first Harper’s Fairy NEC Awareness Walk, May 16, coinciding with NEC Awareness Month. Community members walked at least a mile in Harper’s honor. Grant also sold T-shirts, water bottles, bracelets, tote bags and towels, with proceeds and donations going toward the foundation’s monthly NICU gift baskets.

“I wanted to just let other moms or other families know that they’re not alone and that there is a community out there for them, and that we can all just come together and help each other out,” Grant said.

Grant said she hopes the walk helps educate families about NEC so they are better prepared if their child is diagnosed. Her advice to NICU parents is to ask questions.

“No question is a crazy question,” Grant said. “Throughout the whole process, just make sure you’re writing things down and taking notes because you can forget, so just make sure you keep up with everything.”

Grant said she had heard of NEC before Harper’s diagnosis but never fully understood its severity until it affected her own family. At the awareness walk, she educated guests about the disease, hoping they would learn from her experience.

“I’ve heard of it, but it wasn’t like that big of a deal to me, I guess, until it hit home,” she said.

Grant said this is only the beginning of her advocacy work and that she plans to host more Harper’s Fairy events in the future.

“Just showing support, doing this, just being there for each other,” she said. “As a community, come together and support each other when we’re going through different things because it can be very challenging from day to day. And if you have a support system, it’ll be a little bit easier.”

NEC is a life-threatening neonatal intestinal disease. “Necrotizing” refers to tissue death; “enterocolitis” refers to inflammation of the small intestine or colon. Premature birth, low birth weight and the absence of human milk are among the leading risk factors. For more information, visit necsociety.org.

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