CHARLOTTE — Atrium Health Levine Children’s Hospital has received a $1 million gift from the Working to Advance Rare Disease Support Foundation to continue advancing care for rare disease patients, health leaders said.
Health leaders said the gift honors Ward Winslett, the firstborn child of WARD’S Foundation co-founders Caroline and Trey Winslett.
Ward died of a rare disease in October 2020, just six days before his 13-month birthday.
The Winsletts said Ward was seven months old when he was diagnosed with type II Gaucher disease, a rare disease that affects one in 100,000 people and has varying degrees of severity. He had the rare type that occurs in infancy and is usually fatal by the age of two.
“And so began our diagnostic odyssey,” said Caroline Winslett. “It was an incredibly traumatic experience, and what we’ve learned is that when a rare disease strikes, it takes a whole village.”
She said that she and Trey spent hours each day learning as much as they could about Ward’s illness.
In January 2021, the Winsletts announced they had established the WARD’S Foundation with a mission to educate, support and improve the overall patient experience for families living with rare diseases.
“We are committed to doing 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 build the Ward Winslett Center for Pediatric Rare Disease on the sixth floor of Levine Children’s Medical Plaza on Blythe Boulevard.
The Medical Plaza is currently undergoing a complete renovation which is expected to be completed within the next two years. The outpatient center will reportedly serve over 40 counties, providing care and support to families living with a rare disease.
“The Ward Winslett Center for Pediatric Rare Disease will provide our patients with access to a range of services under one roof, ensuring families like the Winsletts spend less time traveling and on appointments and more time with their children,” said Specialty Medical Director at Levine Children’s Hospital said Ashley Chadha. “In addition to meeting the clinical needs of families, the center will serve as a catalyst for innovation in quality improvement, research and education to support fundamental changes in rare disease care.”
The Ward Winslett Center is scheduled 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, the Torrey Hemby Center and the Nephrology Center of Excellence.
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