We want to express our heartfelt thanks for taking a moment to visit our fundraising page.
Our commitment to making a difference has led us to participate in the Congenital Heart Walk, an event that carries immense significance for us. It's not just a walk; it's a stride toward changing lives. This endeavor is all about supporting The Children's Heart Foundation and their crucial mission - advancing the diagnosis, treatment, and prevention of congenital heart defects through groundbreaking research.
Our son, Max, was born in January of 2023 with a critical, severe CHD called Hypoplastic Left Heart Syndrome (HLHS). We found out at the routine twenty-week anatomy scan that something was very wrong with his heart. We were eventually referred to the cardiology center at Oklahoma Children's Hospital in OKC, where he was diagnosed in utero. In basic terms, HLHS happens when the left side of the heart - left ventricle, aortic valve, aortic arch, and mitral valve - does not grow normally, or at all, in utero. There is no cure for HLHS, only palliative surgeries and medication, which will bridge them to an eventual heart transplant later in life. The three surgeries are the Norwood, which Max had the day after he was born, the Glenn, which he had around eight months old, and the final surgery, the Fontan, which he is projected to receive sometime next year. The surgeries basically re-route blood flow to bypass the left ventricle completely and render the right ventricle as a single ventricle to carry the entire vascular and pulmonary load. Medications help optimize and extend heart function for as long as possible, and catheter procedures are common interventions to further extend the surgical palliation. The single-ventricle path is not ideal, but it is the gold standard for now, as research in stem-cell science and bioengineering heart tissue is currently being tested to hopefully open up new possibilities for single-ventricle patients. Fontan anatomy can help these kids live longer lives than ever before, but not without complications, those being are primarily Fontan Associated Liver Disease (FALD) and Protein-Losing Enteropathy. Often, adult HLHS patients at the time of them being in need of a heart transplant will also need a liver transplant at the same time.
Max is currently thriving post-Glenn at almost three years old. He has had his fair share of complications in his two and a half short years - a paralyzed diaphragm and corrective surgery, a paralyzed vocal cord, a g/j feeding tube, a blood clot, sepsis, multiple hospitalizations for average childhood viruses that hit him harder than heart-healthy kids, and developmental delays. Even still, with all those setbacks, he has been so, so lucky. Again, research, expanding hospital programs, education on CHD treatment and outcomes in medicine, advocacy, and support for CHD families are so crucial for the future outcome of these patients.
We warmly invite you to become a part of this significant journey by supporting our fundraising efforts. Together, we can raise the funds essential to drive forward life-saving research. Your contribution holds immeasurable value to us.
Thank you for your generosity and for standing beside us in this mission. Your support means the world.
- The Mancinis - Nick, Afton, Minerva, and Max
