WARDS Foundation

Inspiring Hope

A LITTLE BOY’S LEGACY. A BIG DOSE OF HOPE.

When Caroline and Trey Winslett welcomed their first-born child, Ward, they fell hard. “He had such a personality, and he was so easy to love,” said Caroline. “You couldn’t help but love him when you looked into those deep blue eyes,” added Trey.

He was perfect in every sense, except for one small genetic defect. Ward was seven months old when he was diagnosed with Gaucher’s Disease (pronounced go-SHAY), an incurable rare disease that occurs in one in 100,000 individuals and has varying levels of severity. Ward had the rare type that begins in infancy and is usually fatal by age two.

“And so began our diagnostic odyssey,” said Caroline Winslett, who explained that she and Trey spent hours each day learning as much as possible about Ward’s disease, with support from Atrium Health Levine Children’s. “It was an incredibly traumatic experience, and we learned some vital lessons. First and foremost: Love is important to a child with a rare disease, and it provides a comfort to both the child and his or her loved ones. And second: When a rare disease strikes, it takes a village.”

The Winsletts lost their beloved Ward in October 2020, just six days shy of his 13-month birthday. They turned their heartbreak into determination, driven by their wish to inspire hope in other families facing a similar diagnosis. In January 2021, they founded WARD’S Foundation (Working to Advance Rare

Disease Support) with the mission of educating, supporting, and improving the overall patient experience for families facing rare disease.

On February 28, 2022 – National Rare Disease Day – WARD’S Foundation announced a $1 million gift to Atrium Health Foundation to help further advance the care of rare disease patients at Levine Children’s Hospital. In recognition of the gift, the Ward Winslett Center for Rare Disease will be established on the sixth floor of the Levine Children’s Medical Plaza. The outpatient center will serve over 40 counties, offering efficient, coordinated care and a support system for families who are navigating the complexities of living with a rare disease.

The Ward Winslett Center for Pediatric Rare Disease will provide patients with access to an array of services under one roof, ensuring that families like the Winsletts spend less time traveling and in appointments, and more quality time with their children. In addition to meeting the clinical needs of families, the Center will serve as the catalyst for innovation in quality improvement, research, and education to support foundational change in the delivery of care for patients with rare diseases.

“We feel like we have an obligation to do this for others,” said Trey Winslett. “We want to honor Ward’s legacy by building a network of treatment options and support around the Carolinas… so no family has to go through this alone.” ”

WARD REALLY IS OUR GUIDE. WE WANT HIS LIFE TO HAVE A LOT MORE MEANING THAN JUST HIS 13 MONTHS ON EARTH WITH US. ”

– TREY WINSLETT

1 in 10

Americans has a rare disease

90% of rare diseases have no FDA-approved treatment

Children

with rare diseases: - require 7x more clinic visits than their peers - account for 1/3 of all pediatric healthcare spending.

Projected to open in 2024 in

the newly renovated Levine Children's Medical Plaza, the Ward Winslett Center for Pediatric Rare Disease will join other specialty centers such as the HEARTest Yard Congenital Heart Center, (which opened last year), the John and Donna Justice Pulmonary Diagnostic Center, Torrey Hemby Center (Oncology), and the Nephrology Center of Excellence, among 30 other specialty practices. Funding from the WARD's Foundation gift will enable the Center to build upon its core staff, emphasizing communication, quality, operational metrics, and clinical and family support.