At the age of ten, Julie DeStefano suffered from a rare condition called Budd Chiari Syndrome, which caused liver failure. Confined to a wheelchair, she found out she was getting a new liver on an Easter Sunday. “I couldn’t take being sick anymore, seeing the strain on my family and my own physical debilitation.” 15 years have passed since her transplant, and Julie makes it a point to live life to the fullest.

Julie's Story

As 25-year-old Julie DeStefano remembers, “My childhood rolled along happily and I was in good health until my tenth birthday, when the pizza we ate to celebrate didn’t taste right to me.” A week later, severely dehydrated, she was in a local children’s hospital where doctors were unable to make a diagnosis. As her abdomen grew, she lost a great deal of weight in the rest of her body, “shrinking into skin and bones.” Months passed as Julie became more ill, and doctors were still at a loss for a diagnosis that made sense.

Julie’s parents took her to a hospital in Gainesville, FL, where they first heard the words “Budd Chiari Syndrome” – a rare condition that results from blood clotting in the hepatic veins flowing out of the liver. Julie’s liver was failing, and she needed a transplant. Julie was now in very poor health, unable to attend school full time, and confined to a wheelchair. The fluid retention in her abdomen (ascites) made breathing difficult.

“My appearance was very unusual,” recalled Julie. “A skinny child’s body with a huge, distended, pregnancy-looking belly. People, and especially kids, were mean sometimes, although there were so many others who were wonderful and uplifting and truly helped me through the school year and this illness.”

On Easter Sunday that year, Julie’s nursing staff at the University of Nebraska Medical Center brought her a pizza box. Upon opening it, Julie discovered a note: ‘Special de-LIVER-y for Julie.’

“My father still carries the note with him to this day,” Julie recalled. “It was an indescribable moment and a mixture of emotions: sorrow, disbelief, overwhelming joy. I was not afraid but very relieved: I couldn’t take being sick anymore -- seeing the strain on my family and my own physical debilitation. And one way or another, this was a means to change, whether it be final or anew.”

Julie has since made it her mission to live to the fullest. She has a deep-rooted passion for aviation, is a licensed pilot and works in aviation marketing. Julie is also an avid airshow and Reno Air Race fan. She owns and rides a Yamaha R6 sportbike and loves to spend time at the beach and with friends. And she still finds time to volunteer with LifeLink of Florida, her local organ recovery agency.