Connective Issues Winter 2026

Finding Strength inEvery Step

When Ozzy first felt the pain in his chest, he thought it was heartburn. Two hours later, his decision to go to the ER would save his life—and change it forever. “In 2000, I received an aortic valve replacement after having an aortic dissection,” Ozzy said. “When I woke up from the anesthesia, my doctor told me the dissection confirmed a suspected diagnosis of Marfan syndrome, and things would be di ff erent from then on.” The years that followed were not easy. Ozzy lived with Marfan syndrome for 25 years, navigating multiple open heart surgeries, long hospital stays, and the physical and emotional stress of a complex diagnosis. And yet, his story is one of perseverance, faith, and community. “Since being diagnosed, my life has been quite an adventure,” he said. “Yes, it’s been rough, but I’ve lived a great life. I’ve learned to live with my diagnosis and make the best of what the Lord gave me. I’ve been blessed with a beautiful family, and they give me reason to stay as healthy as I can.” Getting Connected with Community Ozzy and his family were introduced to the Marfan Foundation community in 2014 after his first son, Zayden, was born with Marfan syndrome. “My wife and I looked for care and were referred to the Marfan Clinic at Memorial Regional Hospital in Florida,” Ozzy said. “That’s where we met Dr. Roman Yusupov and his excellent team who introduced us to this amazing Marfan Foundation community.” That introduction led them to the Foundation’s Walk for Victory in Nashville, one of 24 community walk events held across the country. “What I like most about Walk for Victory is that for my family, everybody wins,” Ozzy shared. “I get to talk with others who have gone, or will go, through the same things. My wife meets other parents. My son meets kids his age living with Marfan. My other son meets siblings. Everybody benefits.” A Meeting with the Doctor Who “Saved His Life” At the 2024 Nashville Walk for Victory, Ozzy connected with the doctor whom he credits with giving him a second chance at life, Dr. Ashish S. Shah, Chair, Department of Cardiac Surgery, Vanderbilt University Medical Center. “When I came to Nashville for the first time, I was in end-stage congestive heart failure,” Ozzy explained. “I was being kept alive on continuous medication through a pump I carried with me at all times. I had been denied placement on a transplant list by every hospital in the country.” That changed when Dr. Shah agreed to evaluate Ozzy inperson.

 Ozzy and Dr. Ashish S. Shah

“My wife and I promised we would do our part if he could just give me a chance,” Ozzy said. “Dr. Shah gave me that chance. On March 3, 2025, he performed the heart transplant that saved my life.” Living Today with Gratitude and Purpose “After what has felt like a lifetime of heart problems, God has blessed me with a new heart,” he said. “I’ve been given a second chance at life, and I must do my best to stay healthy in honor of donors and those still waiting.” For Ozzy, Walk for Victory is more than a walk. It’s a reflection of everything that carried him through—the importance of listening to your body, seeking special ized care, and staying connected to a community that understands. “My advice to anyone newly diagnosed is to see all your specialists, take your medications, and lean into the Marfan Foundation,” he said. “It’s an amazing resource, and everyone involved truly cares.”

This year, Walk for Victory events across the country will once again bring together individuals and families whose lives have been touched by Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions. Please join us!

Find your walk at Marfan.org/walk

12

Marfan.org