I have chosen to run for CHD research to raise awareness for patients like my nephew and I, along with the families who walk the journey with them. I was born on June 16, 1987. Four days later, I went into heart failure and was diagnosed with coarctation of the aorta. At 7 days old, I underwent my first of four heart surgeries. The next year, I underwent repair for re-coarctation, in 1990 I had an aortic valvotomy for aortic stenosis and in 1992, my aortic valve was replaced with the smallest adult mechanical valve available at the time. After nearly 30 days and many touch-and-go moments, I was discharged from the hospital. A year later, my nephew, Drew, was born with truncus arteriosus.

My childhood was mostly uneventful, but at age 16, I began seeing a general cardiologist after telling my mom I was tired of being the oldest patient in the pediatric cardiology office. Unbeknowst to us, however, I wasnt't in the right care. Eventually, in my early twenties, I found my way to ACHD care and have been followed yearly since. Drew also underwent several surgeries in his life, with his most recent surgery at age 17. However, in 2013, our family would be absolutely shattered by his sudden loss.

Drew was 20 years old and had been out of cardiology care for less than two years. He was active and loved the outdoors. You could almost certainly find him hanging out in his Eno overlooking a body of water somewhere on the weekends - or playing soccer with friends - something he did every Sunday. On November 10, 2013, his friends arrived at the soccer field at the same time as Drew, who usually was always the first one to arrive and would be found kicking the soccer ball around getting warmed up. This day, however, Drew didn't feel good and knew something was wrong. He was conscious just long enough to tell a friend to call my mom. I was working nightshift in the pediatric cardiac ICU at the time and awakened to the sound of my husband's footsteps coming up the stairs to hand me the phone. My mom wasn't sure of the severity of the situation at this point - but she and my dad were on their way to check things out. The second call came in. All I remember was hearing the words "cardiac arrest." I vividly remember the feel of the carpet underneath my knees as I collapsed, screaming and begging for him to be okay. Fifteen minutes into a four hour drive to Atlanta, the third call came in - my nephew was gone. 

Drew was pure love and light. He was a free spirit who was finding his path in life. He would have started a full-time job with benefits just two weeks after his passing. He never complained about any symptoms. He made friends wherever he went and his smile, as cliche as it sounds, lit up a room. His laugh was infectious and he loved spending time with his family and his friends. Shortly after, I decided that the ICU was too much of a trigger and began a new position in pediatric cardiology outpatient case management. But I have never forgotten the names of the children I took care of who never got to experience life outside those four walls - nor those children and adults, some I considered friends, I've met along my journey.

About a year after Drew's passing, I began experiencing arrhythmias which terrified me. I was diagnosed with premature venticular contractions and short runs of ventricular tachycardia, earning myself another medication to add to my daily life. I sought out every opportunity to give back and honor Drew's life through advocacy and fundraising for CHD.

It wasn't until 2020, however, when I realized the most authentic way I could honor my nephew was to take the very best care of myself that I could and live life as fully as possible. I began to exercise and eat better, losing nearly 40 pounds in a year and a half which I've kept off - except for a few holiday pounds :) With my new found fitness, I wanted to do something I had never done before - and thought I couldn't do - a 5K. As a child, my parents were told no sustained running, but I decided to discuss this with my ACHD cardiologist. After recommended testing, I was cleared to train for a 5K. I successfully completed my first one in under 45 minutes in 2022!

While I am grateful that my aortic valve is over 30 years old and my overall is doing pretty well, I know that it's a matter of if, not when, I'll have to face another surgery or intervention. My arrhythmias have improved - but they'll never go away. At each cardiology appointment, I'm waiting for the other shoe to drop. I'll never be an elite athlete. I'll never bear my own children. And while I could focus on what CHD has taken from me, I choose to embrace all that this life has given me - a community I otherwise would have never known, a supportive husband and family, a rewarding career - a life well lived. I can't predict the future but I can make the best out of the present. That's why I choose to run for CHD research. To bring awareness to the lifelong nature and uncertainty of CHD, to honor the lives of those like my nephew taken too soon, and for the hope of a brighter future. I would be forever grateful for your support!