Kevin Baffa ’14 will be one of only four Barth syndrome patients in the world to hold a bachelor’s degree when he graduates in August. With less than 200 known cases worldwide, Barth syndrome is a genetic condition that affects only boys and prevents the body from properly converting nutrients into energy. This leads to constant fatigue, as well as a weakened heart and immune system, putting patients at risk of heart failure, cardiac arrest and infection.
When Kevin started at Immaculata in 2008, no one with the condition had yet been successful in college. “It was assumed that we probably couldn’t do it,” Kevin said. “Because nobody else had been successful at getting through college to that point, I hadn’t thought it to be a viable option.”
He took a semester off after graduating from high school to recover from surgery. “Most of my friends had gone away to school, and I just hadn’t put much thought into what it was I actually wanted to do with my life,” Kevin said. “Sitting at home, though, I came to the conclusion that it was at least worth trying, even if I had to go at a slower pace to make it feasible. That semester off also made me realize that I didn’t want to just sit by and let my condition dictate how my life would play out. I wanted to make something of myself, even if I wasn’t sure what that was at the time.”
Kevin and his mother, Rosemary, stopped in at an Immaculata open house on a whim. “A couple weeks later, he said to me, ‘I’d like to do this,’” Rosemary said. So the Baffas made it work.
“He’s my son. I would do anything for him,” she said simply. “So it’s a joint effort, to get him through. And he hasn’t done it the easy way, and he hasn’t done it the traditional way. But he’s definitely done it his way.”
Kevin has found fatigue to be the biggest challenge as he has pursued his degree in Communication. But it has never been an insurmountable challenge for him. He takes naps in the afternoons, gets adequate nutrition, and takes his medicine. Rosemary drops him off right at the door of the buildings where his classes are held, and he uses elevators when he can. It can be hard if he has to walk down a long hallway. “Picture yourself being 25 years old, which he is, and feeling like you’re 80,” Rosemary said. But, she added, “he very rarely complains.”
“I try not to have more than two classes a day, and if possible get one free day a week,” Kevin said. He manages his schedule carefully, allowing time for rest. He has taken on an internship this semester, along with his classes. And he belongs to one honor society and is eligible for another one.
“I’m surprised I’ve done as well as I have,” he said. At the beginning, he felt as if it would take forever to finish his degree, but, “I was able to keep a good mind about it,” he said. “You can’t let Barth syndrome define you. It is a part of you, and you have to let people know about it, but it can’t be all that you are.”
“There are very few people on this campus who know what he has truly accomplished,” Rosemary said. “He’s very quiet and doesn’t make it known.” Last year, Rosemary said, he got the
flu one weekend, went into heart failure, and was hospitalized. In his laid back yet persistent way, he surprised his mother by asking her to drop him off at school after missing only one day of class. He has had several other instances of heart failure and cardiac arrest during his college career, but has missed very few days of school.
“Whoever hires him [will be] very fortunate, not only for the abilities that he has, but for the good that he brings out in others,” Rosemary said, pointing to the inspiration that her son is: “If this kid can do this, then I certainly can.”
Kevin hopes to use his Communication degree to assist a nonprofit, or the community relations department of a sports team. He is also interested in helping the Barth Syndrome Foundation, which his family helped to establish to provide support for other families and patients and to raise funds for medical research about the condition.
“Through learning about topics such as grant writing, social media usage and public relations, I am better able to be a voice for the foundation whenever they need me,” Kevin wrote last fall in a prize-winning essay about what Immaculata’s College of LifeLong Learning means to him.
The University didn’t just provide an opportunity to develop his communication skills. “Thanks to Immaculata,” Kevin wrote, “I have been able to show what those affected by Barth syndrome are capable of. That we can go to college like those without health problems and succeed just as they do.”
As one of the oldest Barth syndrome patients, Kevin wants to encourage the younger boys he has met through his involvement with the Barth Syndrome Foundation. “If I can just be one more person who shows them that they can be just like everyone else, when people are telling them that they can’t, then that’s a plus,” he said. “Whether other people have low expectations of you or you have low expectations of yourself… if you put in your best effort, you can succeed.”