2024 Charlotteans of the Year: Trey and Caroline Winslett
After their son died from a rare genetic condition, they helped build a community and treatment facility for families like theirs
Ward Winslett was born on Sept. 22, 2019, and that winter, his parents began to learn his quirks. He was strong-willed. Every night, Trey would read him a story, and though Ward didn’t speak, he made it clear which books he wanted. “He would look me in the eyes, and he would reach for my face and pull my forehead to his,” Caroline says. “That was our way of speaking.” Trey calls his son’s personality “pure joy.” He chokes up. “You knew how this was going to end,” he says, “but you could tell it was making a difference to him.”
Seven months after he was born, on April 24, 2020, Dr. Elizabeth Jalazo, a pediatric geneticist at UNC Chapel Hill, told Caroline and Trey that Ward had Gaucher disease. This rare genetic condition, which affects the liver, spleen, and muscular function, occurs in just 1 in every 100,000 people. In infants, it’s fatal.
Just as Trey and Caroline were getting to know their son, they had to start to saying goodbye. The medical and bureaucratic complications of dealing with a rare disease only made the process harder. For example, those with rare diseases qualify for Medicaid, but the application is structured for those who are applying because they have limited income. “You need a Ph.D. to apply for Medicaid,” Caroline says.
After the diagnosis, their pediatrician, too, was at a loss, Caroline says: “It was basically, ‘Here’s the referral to hospice.’”
But Trey and Caroline, who both worked in finance, had the resources to do more than that. “We had every advantage known to man,” Trey says. “We had all the social capital, the connections, the financial ability, everything, and it was still an extremely difficult journey.” They couldn’t imagine the process for families with fewer resources, and they felt obligated to leverage their advantages to help.
Ward died Oct. 16, 2020. Three months later, Caroline and Trey started WARD’S Foundation to support families affected by rare diseases.
In 2022, the organization raised $1 million to establish the Ward Winslett Center for Complex and Rare Diseases at Levine Children’s Hospital. But even though the center provided a critical resource, it didn’t have the capacity to serve everyone who needed it. As Trey points out, rare diseases, when combined, affect more people than cancer and AIDS put together, and they account for about 40% of the hospital stays at Levine Children’s. Nevertheless, the diseases’ rarity leaves patients and their families feeling isolated and helpless.
WARD’S Foundation began as a fundraising and community hub, but when the Winslett Center faced a backlog, Trey and Caroline strategized to go further. This year, they laid the groundwork to provide direct services, like consultations with a licensed clinical social worker. “Our goal,” Trey says, “is that every single family diagnosed with a rare disease has access to the resources they need.”
Caroline, a fourth-generation Charlottean, and Trey, who’s lived here for 25 years, were dismayed that so many kids with rare diseases had to travel for treatment. Before the Winslett Center, nothing like it existed in town. Now, families like theirs have a place to turn. “We care a lot about the city and about it being as good as it can be,” Trey says. “And no one should have to leave Charlotte for medical care.”
