Rocky and Lyla Valentine - A Family Heart Affair
Rocky and Lyla Valentine are heart disease survivors from Rogersville, Missouri. Both are featured survivors for #NoMOHeartDisease, the American Heart Association’s year-long initiative created to increase awareness and reduce the prevalence of heart disease in Missouri.
When I was initially asked to share a response for the Congenital Heart Defects Awareness Week blog, many ideas came to mind on what I could share. My perspective on CHD has evolved over the last 19+ years as I have experienced CHD from the lens of a patient and as a parent. As a CHD patient, I have experienced the emotions of being diagnosed as a teenager to the challenges of managing my heart health as a young adult. As a parent of a child with CHD, these experiences are shared with my wife as we want to provide our daughter with normal life experiences while still being cautious of her CHD.
At thirteen, I was diagnosed with dilated cardiomyopathy. After medication therapy did not improve my heart function, I was transplanted in June of 2000. After my transplant, I was able to compete in multiple sports in high school and competed in track and field while in college.
My wife and I married in 2009. When we decided to start a family, we worked with my doctors to ensure that having biological children would be a safe option. Our daughter, Lyla was born in the fall of 2011. At six months old, Lyla was diagnosed with dilated cardiomyopathy. She was transplanted at 9 months and is currently a healthy, active 8-year-old.
After my daughter’s transplant, my wife was encouraged to reach out to our local American Heart Association. In the nearly eight years since my wife and I have had the opportunity to network with other families who have the same experiences as ours. We have been fortunate to share our stories to help inspire others to be mindful of their heart health and to support the American Heart Association in all that they do for research, mentoring and awareness.
The most rewarding experience of working with the American Heart Association is the relationships that are created as a result. When we share our story, it nearly always opens the door to hear how heart disease or chronic heart defects have impacted others. Sometimes these stories have sad endings however, often they result in hearing how great physicians and doctors have used new research and medications to help change someone’s life. This is why sharing our story for Congenital Heart Defects Awareness Week is so important. My hope is that by sharing our experiences will help others to be more aware of CHD while also promoting more support for organizations like the American Heart Association. Collectively, our support of AHA combined with their research, education, and care they provide, can continue to improve the lives of those impacted by congenital heart defects.