GOLDSBORO, N.C. (WITN) – A Goldsboro family is sharing their story and asking for community support as they raise their two-year-old son, diagnosed with a rare genetic disorder.

Declan Newberry was just a few weeks old when his parents, Zach and Alexis Newberry, realized something was wrong. What initially appeared to be a normal newborn quickly turned into daily episodes of uncontrollable crying, sometimes up to 16 hours a day.

The family made repeated trips to Duke University Hospital before an emergency visit when Declan was 4 months old led to nine days of EEG monitoring and ultimately, a diagnosis of EIF4A2.

The disorder causes severe neurological and intellectual delays, extremely low muscle tone, immune system complications, and multiple seizures each day. Although Declan is nearly 3 years old, his mental development is similar to that of a 3- to 6-month-old child.

“He gets 56 hours of nursing care a week,” Zach said.

The Newberrys say the emotional and financial strain has been overwhelming. Zach took two years off work to help care for his son in the beginning, while Alexis now provides full-time support with the help of two nurses. The family continues to travel back and forth to Duke for care and therapy, accumulating significant medical debt.

Local support, including help from the Veterans of Foreign Wars, has helped the family manage expenses.

“It’s been terrifying. It’s been hard. It’s been so hard. Just adjusting to the level of care he gets, it’s every few weeks or months we get a new med or treatment or specialty we have to go see,” Zach said.

To support Declan’s ongoing medical needs, the community is hosting “Declan’s Dare to Be Rare,” a fundraiser scheduled for Saturday, Nov. 22, at Deuces Saloon in Goldsboro. A bike run will begin at noon, costing $20 per bike and $5 for passengers, which includes a barbecue chicken plate. Plates will also be sold separately for $10 starting at 5 p.m.

Funds will help cover therapy, medication, and specialized care as Declan continues his treatment journey.

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