Nancy Petrera and Justin Cohen welcomed their beautiful daughter Olivia (Livie) into the world on May 30, 2015. Olivia came home as a healthy bundle of joy who made life easy for her first-time parents—she slept well, she ate regularly, and she rarely cried. But less than two weeks later, Olivia began suffering from inexplicable conditions including congenital heart defect, high blood pressure affecting her lungs, dilated pupils, seizures, and abnormalities on her brain scans.
Nancy began searching for answers online and found an article published by Dianna M. Milewicz, MD, PhD, and her team at The John Ritter Research Program, which identified a new disease called multisystemic smooth muscle dysfunction syndrome (MSMDS).
MSMDS is a rare disease that impairs the activity of smooth muscle throughout the body, causing widespread problems including aortic and cerebrovascular disease. Milewicz’ team discovered a certain mutation in the ACTA2 gene could cause this disease.
Genetic testing confirmed Livie had the syndrome, and Nancy and Justin decided to help advance research on the condition by supporting Milewicz’ work at The John Ritter Research Program. Their first contribution helped Milewicz launch preclinical studies to reveal the genetics behind MSMDS.
As Nancy and Justin began planning to host the inaugural Love for Livie Legacy Benefit to raise more support for Milewicz, Olivia caught a virus just before her second birthday. After fighting for her life for 12 days, she passed away surrounded by loved ones.
“We felt the best way to honor our daughter and prevent other families from suffering heartbreak was to push forward with the benefit,” says Nancy.
In partnership with the John Ritter Foundation for Aortic Health, Nancy and Justin hosted the Love for Livie Legacy Benefit in 2017 and 2018, raising approximately $230,000 for research in MSMDS at The John Ritter Research Program.
“There is still so much that we don’t know about this syndrome,” says Milewicz. “But Nancy and Justin and supporters like the John Ritter Foundation for Aortic Health are helping us shed light on this devastating disease to bring hope to other families.”