Nashville disabilities advocate Sara Suzanne Ezell, a Vanderbilt University alumna and staff member, died of complications inherent to osteogenesis imperfecta on July 9. She was 42.
As an infant, Ezell was diagnosed with osteogenesis imperfecta, a rare genetic disorder commonly referred to as “brittle bone disease.” Doctors advised her parents to have low expectations for their daughter, who was sure to have a short, fragile life. The disorder occurs in approximately 1 in 20,000 individuals and is characterized by chronic bone breakage and fractures, especially during infancy and childhood; small stature and limb deformities; hearing loss; respiratory difficulties; and other health issues.
But Ezell was destined to defy the odds. She graduated from Hillsboro High School, growing up to be, according to her family, “tenacious and stubborn,” with a “warm heart and ready smile.”
In 1994 she earned a Vanderbilt bachelor of science degree, magna cum laude, double majoring in cognitive studies and mathematics. She also earned a master of education in special education in 1997 at Vanderbilt Peabody College of education and human development, with her sights set on a career in advocacy for individuals with disabilities.
During her master’s studies at Vanderbilt and after graduation, Ezell served as disabilities services coordinator at Vanderbilt’s Equal Opportunity, Affirmative Action and Disability Services (EAD) office. During her time there she was responsible for providing disability services to students, staff, faculty and campus visitors.
“Sara’s heart was really in assisting students,” said Anita Jenious, director of EAD. “She loved it and she was good at it. She was a remarkable advocate, and we will miss her.”
In September 2005, Ezell accepted the role of project coordinator of Project Opportunity at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. The 10-month internship program provides career training and job placement for young adults with developmental disabilities.
Michelle Halman worked with Ezell from Ezell’s first days at Project Opportunity and accepted the reins of the program last year when Ezell became too ill to work.
“Sara was one of the most brilliant women I have ever known,” Halman said. “[lquote]She had the ability to communicate with anyone, and that opened doors for our interns that no one else could have opened.[/lquote]
“To date, Project Opportunity has helped 57 people obtain competitive employment—most at Vanderbilt. Without Sara, this would not have been possible,” Halman said. “She touched the lives of the interns, but also the staff who worked with her and everyone who ever witnessed her ability to open doors for people with disabilities.”
In her spare time, Ezell worked with children with disabilities at the Susan Gray School and the Vanderbilt Kennedy Center and participated in Partners in Policymaking and other advocacy initiatives. In 2004, she was honored by the Mayor’s Advisory Committee for People with Disabilities for her work with Access Nashville, a group of volunteers from the disability and business communities who worked to identify “accessibility friendly” places for out-of-town visitors.
In her obituary, Ezell’s family described her this way: “Sara lived to serve God, love her friends and family, and show us that limitations aren’t all they’re cracked up to be.”
Ezell is survived by her parents, Suzanne and Mancil Ezell of Nashville; brothers Chase Ezell of Brentwood, Tennessee, and Jason Ezell of Lebanon, Tennessee; three nieces; and a nephew.
In lieu of flowers, the family suggests donations to the Monroe Carell Jr. Children’s Hospital at Vanderbilt or the children’s ministries at Rolling Hills Community Church in Franklin, Tennessee, where Ezell taught a pre-K Sunday school class.