My name is Belen Altuve Blanton, and I was born in Venezuela in 1965 a time and place where congenital heart conditions were almost unheard of. My diagnosis, tricuspid atresia, arrived like a storm my family never expected. But my parents refused to give up on me. Their determination, along with the skill of a cardiologist newly returned from training with Doctor Denton Cooley in Houston, Texas, gave me a chance at life that few children in my country had.

Growing up, I lived every day supported by my family’s unwavering hope. Yet Venezuela did not offer the surgeries I needed no Glenn, no Fontan. The shunt placed when I was six months old was the only intervention available. It kept me alive, but it could only do so much.

When I moved to the United States, I finally had access to medical care that allowed me to live a more typical adult life. But the progression of my condition eventually led to Eisenmenger syndrome, at which point surgery was no longer possible. A heart and lung transplant was the only option left, and I did not qualify.

Even then, I refused to lose myself in despair. Instead, I turned toward learning understanding my condition, connecting with others, and finding purpose in community. Becoming active with the Adult Congenital Heart Association expanded my empathy, strengthened my voice, and helped me see that my story could fuel something bigger.

That passion led me to create Fundación Estrellita de Belén (Little Star of Bethlehem), dedicated to supporting children with congenital heart disease in Venezuela. Our work has since grown beyond borders. We are members of Global ARCH (Global Alliance for Rheumatic and Congenital Hearts), advocating for patients at the World Congress of Cardiology, on Capitol Hill representing Florida, and at the United Nations. I now serve on the Global ARCH Board and contribute to global CHD advocacy efforts.

Today, our foundation focuses on empowering Hispanic families through education, early detection, community workshops, bilingual materials, and culturally informed outreach. We are working to ensure families—especially those navigating complex systems know their rights, understand congenital heart disease, and can access meaningful care and support.

My life has not been easy, but it has been purposeful. I believe I’m here to raise awareness, advocate fiercely, and help save lives within the congenital heart disease community. Every day, I carry that mission forward.