Charlotte Families Come Together to Raise Awareness and Support for Rare Diseases

Charlotte Families Unite for Rare Disease Awareness and Support

In the heart of Charlotte, a remarkable journey of love, loss, and hope has inspired a wave of support for families facing the unimaginable challenges of rare diseases. The story begins with little Ward Winslett, who was born on September 22, 2019. From day one, his parents, Trey and Caroline, learned that their son was not only strong-willed but filled with pure joy. Every night, Trey would read to him, and even though Ward didn’t speak, he had a special way of communicating his book preferences, pulling Trey’s forehead down to his. This unique bond created tender moments of connection, leaving a lasting impact on Trey, who recalls those cherished times with emotion.

A Devastating Diagnosis

Just seven months after Ward was born, the family’s world turned upside down when they received news that no parent wants to hear. On April 24, 2020, Dr. Elizabeth Jalazo, a pediatric geneticist at UNC Chapel Hill, diagnosed Ward with Gaucher disease, a rare genetic condition impacting the liver and spleen, and sadly, fatal in infants. As Trey puts it, “You knew how this was going to end.” With this diagnosis, a journey of heartbreak began. They were just starting to know their son when they had to begin the painful process of saying goodbye.

The Challenge of Rare Diseases

As if dealing with the emotional toll was not enough, the couple faced a maze of medical and bureaucratic challenges associated with managing a rare disease. While families like theirs with rare diseases qualify for Medicaid, the application process is typically designed for those with limited income, leading Trey to remark, “You need a Ph.D. to apply for Medicaid.” Their pediatrician provided little comfort, simply offering a referral to hospice care. Despite having the necessary resources and connections, navigating this path proved to be an uphill battle. “We had every advantage known to man,” Trey said, acknowledging the struggles they faced.

A Legacy of Love

Tragically, Ward passed away on October 16, 2020, but his spirit inspired his parents to create something positive out of their grief. Just three months later, they founded WARD’S Foundation to support families impacted by rare diseases. In 2022, their tireless efforts culminated in raising an impressive $1 million to establish the Ward Winslett Center for Complex and Rare Diseases at Levine Children’s Hospital. This center was a much-needed lifeline for families grappling with similar challenges.

Meeting the Needs of the Community

While the Winslett Center proved to be a critical resource, it quickly became evident that it couldn’t cater to every family in need. Rare diseases, when considered together, affect more individuals than cancer and AIDS combined, yet the associated rarity often leaves families feeling isolated. Understanding this dire need, WARD’S Foundation evolved beyond fundraising to provide direct services, such as consultations with licensed clinical social workers. “Our goal,” Trey states, “is that every single family diagnosed with a rare disease has access to the resources they need.”

A Community Focus

As a fourth-generation Charlottean and a long-time resident, Caroline is passionate about her community. Both she and Trey were disheartened to discover that many families had to travel far and wide for treatment before the Winslett Center opened its doors. They wanted Charlotte to be a place where families could find the care they desperately need without the added burden of travel. “We care a lot about the city and about it being as good as it can be,” Trey expressed, emphasizing that “no one should have to leave Charlotte for medical care.”

Looking Ahead

The Winslett family’s story serves as a powerful reminder of how pain can lead to purpose. Their journey has not only paved the way for improved resources in Charlotte but has also fostered a sense of community among families battling rare diseases. With continued efforts, they hope to reach every individual in need and ensure that no one feels alone in their fight. After all, as Trey eloquently puts it, “This is our way of speaking,” echoing the sentiment that we are stronger together.