Connections That See Me Through
By Peter Donato
When I was in 5th grade I was diagnosed with Loeys-Dietz Syndrome. My parents had long suspected I had a connective tissue disorder and, after years of seeing different doctors and being told no, they finally got confirmation that they were right. My parents took the family to our first Marfan Annual Conference a few months later in the summer of 2006. I didn’t begin to fully understand my diagnosis and how unique it made me until a couple years later, in 2008, when I met even more people with Loeys-Dietz and other connective tissue conditions. These connections have stayed strong and the people I met then are still close friends now, even from thousands of miles away.
During the first couple years after being diagnosed, Loeys-Dietz had not been very prominent in my life. Aside from the numerous doctor appointments, tests, and medications, I had not needed surgical treatment. That changed in the spring of 2009 when I had the growth plates in my right leg removed. My right leg was longer than left and it was causing severe scoliosis of my lower spine. After that I stayed out of the operating room through high school (with the exception of a couple minor dental procedures). Unfortunately, that run would end at the same time my high school career ended.
In the winter of 2013, I had my mind on college and hoping the basketball team I managed would be able to sneak into the state tournament. I went in for what I thought would be a regular cardiology appointment with an echo that, by then, I had done numerous times. My doctor walked in and told me and my parents that it was time to get my aortic root replaced. While finishing up senior year, I was also talking with doctors trying to figure out where to have the surgery and, more importantly, when. I told my parents from the start that I wanted to start college in the fall as I had planned all year, and I was going to do whatever it takes to make that happen.
That June, I went to the two-day college orientation and the next day I was having open heart surgery. I recovered well and even got out of the hospital ahead of schedule and spent the summer recovering and building my strength back to be ready for college two and a half months later. I started college on time and went through the first year and a half of college before I ended up in the operating room again. I had surgery to move both the jaws forward to help relive my severe sleep apnea. I finished my sophomore year of college and once again found myself in the operating room to correct my lower jaw that wasn’t healing correctly. Thankfully, I haven’t had to have any major procedures since and have been able to continue being me.
Going through all the ups and downs of having Loeys-Dietz and the physical and mental toll it can have on people can be difficult at times. The resources from LDSF and The Marfan Foundation were vital in helping me get through my recoveries and what to expect from talking with doctors to recovery. Being able to talk to people who have gone through the same procedure and pains can be very helpful. Without the people I have met through these organizations I would not have been has relaxed and confident going through them.
Join Our Journey of Hope
Your gift helps the Loeys-Dietz Syndrome Foundation expand the tools and support for families like Peter’s facing a Loeys-Dietz syndrome diagnoses. Your support will directly impact all children and adults affected by Loeys-Dietz syndrome and have a lasting effect for generations to come.