Loeys-Dietz Syndrome sucks. It just does. Doctors visits, missed school, surgeries and scans, recurring pain…..and that’s for the apparent milder or moderate manifestations. While the time for heart surgery is creeping up with each echocardiogram, we are lucky to have not had to undergo that surgery yet.
I think the hardest part of the diagnosis for my oldest, Eddie, is the limits on athletics. When he was just a toddler, his favorite show was ESPN’s Sports Center. His first word, literally, was ball….not mama or dada. From among the earliest ages available, he played baseball, basketball, and soccer. As just a youngster, he would tag along with his dad on the golf course. However, much of this athletic participation had to end in middle school once his aorta reached a certain diameter and he began growing rapidly at adolescence.
However, this awful diagnosis and it’s challenges have brought unique blessings. The Loeys-Dietz Syndrome is tied to his food allergies which taught him how to self-advocate. It also provided him an opportunity to speak to our local school board to request a policy and to be featured and interviewed by a WXII News. He also has traveled and enjoyed several things in Baltimore, MD as a result of our trips there for medical visits. Our family has gotten to know the most incredible group of people ever through Loeys-Dietz Syndrome conferences. Additionally, Eddie has had incredible, life changing experiences and relationships as a result of his involvement with Team IMPACT and the Wake Forest baseball team.
It appears, Eddie will have another incredible experience…..in fact, it will be a wish come true. We received the confirmation today that Eddie has been approved to have a wish fulfilled through the Make A Wish Foundation. Eddie has not yet decided on a wish, but he sure is having fun considering the possibilities. Of course, as we proceed through the process, I will be sharing the experience here with you.