Connective Issues Spring 2023

 Peter Donato, 28, Loeys-Dietz Syndrome “I always knew I wouldn’t be able to keep playing basketball. When I got to high school, I knew my aorta was approaching the magic number for surgery. I made the decision to step o ff the court, and I asked the boys’ basketball coach if I could be the manager. I did that for the four years of high school and also managed girls’ softball. When I got to college, I talked with the women’s basketball coach and joined the team as the manager and was able to do that throughout college. I was still able to be a part of athletics, which I love, but I was doing it in a way where I didn’t have to worry about my health.” (Peter is pictured far left.)

 Brooke Pulliam, 23, Marfan Syndrome

“Dance has always been a huge passion and hobby of mine, and I danced for 15 years, from age three to 18. Everyone at the studio always made me feel included and just let me do what I knew I could do. You know your own limits! Having great support around me was super helpful in dealing with Marfan syndrome while pursuing my passion. My advice for others is to not focus on all the things you can’t or are told not to do, but focus on what you can do!”

 Samantha Noe, 22, Marfan Syndrome “When I was growing up I was constantly being told what I wasn’t allowed to do, so trying to figure out what I was passionate about was tricky. After finding the culinary/hospitality field, I realized it’s something that I really enjoy and am good at. Even though it can be physically demanding and not always the easiest with my condition, with adjustments, I have found a way to make my passion something that works with me instead of against me. Don’t miss out on things just because you think you aren’t allowed to do them. Talk to your doctors and see what they say. Don’t be afraid to try di ff erent things and if they are too hard at first see if there is a way to adapt/make it work for your body. I have found that listening to my body and communicating with those around me is the most important thing.”

 Grace Barnhart, 18, Marfan Syndrome “I am a Marfan syndrome fighter and caregiver to my dad. Having Marfan syndrome comes with physical boundaries. I was a sideline cheerleader for nine years, but a few months before I started high school, I was told I had to quit to keep myself safe. It broke my heart, but I used this experience to start a new

passion. I managed my high school’s football team for four years. I was at practices and games helping the team with anything needed. It was di ff erent from my original passion, but I was still a part of the football (on-field and sideline) experience and loved every minute of it! Don’t let your boundaries stop you, let them empower you. If one plan changes, start a new path!”

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Spring 2023