“When we went to Joe DiMaggio’s ER, we had no idea our infant was in heart failure,” said Brandi, Deacon’s mom, “but immediately I felt like he was in good hands.”

There were things going on with Deacon that needed to sort out. His heart function was depressed, and genetic testing confirmed he had Barth syndrome, an extremely rare condition primarily in boys.

While Brandi said Deacon’s diagnosis was a shock, especially since there is no cure, she was relieved the Joe DiMaggio Children’s Hospital Heart Institute doctors had seen it before. “[The Joe D team] just made us feel at peace,” Brandi said. “They were confident in our care plan.”

Together with the family, we devised a step-by-step plan to treat the symptoms, said Svetlana Shugh, MD, medical director, Ventricular Assist Device Program.

“One year there were more than 170 visits,” Brandi said. “And in all of those moments, Joe DiMaggio Children’s Hospital was there for our family.”