I was born with a rare condition called Hypoplastic Left Heart Syndrome, though, at the time, no one knew it. At the age of 4 months, after fierce advocacy from my mom, I was diagnosed with HLHS (in basic terms... half a heart). I was going to need surgery. Not just one…  three were predicted. I didn’t have the predicted three surgeries the doctor spoke of. I instead had a total of 8 major open-heart operations. 

 

My first operation was at the age of 4 months old. It’s incredible to think that my heart was the size of a walnut. How anyone could cut, stitch, and repair something so small is amazing.  4 days later I went back to the O.R. My odds for survival decreased to grim. They kept fighting, and so did I. I had my third surgery when I was 2. I suffered a stroke and lost all movement on my right side. Yet, it now works just fine.  My fourth surgery was at the age of 4, and my 5th in second grade, making me the first child ever to undergo what is now called the bi-ventricle repair. Heart surgery number 6 was in 8th grade and numbers 7 and 8 were just after my senior year of high school. 

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Having grown up with CHD, I know what it’s like to be considered a trailblazer for medical advancement. I, and others like me,  often receive the cutting-edge and at times experimental procedures that go on to become best practice approaches.

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Due to my experiences, it has become my mission to raise awareness for both acquired and Congenital Heart disease. It can affect people of any age. I was born with mine, but my father lost his life at the age of 38 to his. I work to instill hope, provide education, and share the advice that I have learned along the way, and have been so grateful to have formed many partnerships with several incredible organizations whose mission aligns with mine.