CHARLOTTE — Atrium Health Levine Children’s Hospital has received a $1 million gift from the Working to Advance Rare Disease Support Foundation to help further advance the care of rare disease patients, health leaders said.
Health leaders said the gift honors Ward Winslett, the first-born child of WARD’S Foundation co-founders Caroline and Trey Winslett.
Ward died due to a rare disease in October 2020, just six days shy of his 13-month birthday.
The Winsletts said Ward was seven months old when he was diagnosed with Type II Gaucher’s Disease, a rare disease that occurs in one in 100,000 individuals and has varying levels of severity. He had the rare type that presents in infancy and is usually fatal by age two.
“And so began our diagnostic odyssey,” Caroline Winslett said. “It was an incredibly traumatic experience, and what we learned is that when a rare disease strikes, it takes a village.”
She said that she and Trey spent hours each day learning as much as possible about Ward’s disease.
In January 2021, the Winsletts said they established the WARD’S Foundation with the mission of educating, supporting and improving the overall patient experience for families facing 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.”
Health leaders said the gift will be used to create the Ward Winslett Center for Pediatric Rare Disease on the sixth floor of the Levine Children’s Medical Plaza on Blythe Boulevard.
The Medical Plaza is currently undergoing a complete renovation, projected for completion in the next two years. The outpatient center will serve over 40 counties and will offer care and support for families who are navigating the complexities of living with a rare disease, according to reports.
“The Ward Winslett Center for Pediatric Rare Disease will provide our 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,” Specialty Medical Director at Levine Children’s Hospital Ashley Chadha said. “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.”
The Ward Winslett Center is set to open in 2024. It will join other specialty centers such as the HEARTest Yard Congenital Heart Center, the John and Donna Justice Pulmonary Diagnostic Center, Torrey Hemby Center, and the Nephrology Center of Excellence.
(WATCH BELOW: Titus Davis, former Central Michigan and NFL wide receiver, dies from rare kidney disease)
©2022 Cox Media Group
/cloudfront-us-east-1.images.arcpublishing.com/cmg/LH3JSJEF3VBLRJLJQESEAG34AM.png)
