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Ezra has a complex heart condition (double outlet right ventricle, mitral atresia, hypoplastic left ventricle, partial anomalous pulmonary venous return, mild aortic stenosis, mild tricuspid regurgitation, coarctation of the aorta). He has had four heart surgeries. He was 13 days old at his first surgery and 2 1/2 when he came home from his last heart surgery. The first three surgeries are the treatment for heart conditions like his. Ezra’s heart condition cannot be “fixed.” He is alive today because the first three surgeries created an entirely new pathway for blood to travel around his body. This is referred to as “single ventricle with Fontan circulation.”
Ezra is now 15 years old! He is in the 9th grade at Fortune Academy. Before the pandemic, a highlight of Ezra’s summer was attending heart camp! This camp offers the typical summer camp fare with one significant difference. All campers have heart conditions that require daily care provided by onsite medical staff (nurses, pharmacist and cardiologist). For one week, living with a heart condition was not the exception, but the norm! This was the first time Ezra met other kids with his heart condition; they share the experience of living with a complex heart condition, as well as their experience of the often invasive medical procedures and treatment. This past summer Ezra attended virtual heart camp using the Zoom platform.
Ezra likes school, reading, playing Minecraft and keeping up with his favorite gaming YouTubers. He has 3 siblings: Silver (13 1/2), Oscar (12) and Lucy (7). Time flies!!
Ezra has not been hospitalized since he was 2 1/2!! His overall health has been very good. During the intervening years, we have enjoyed watching our kiddos grow individually and in their love for one another. We have done our best to live in the moment; to vacation often, to embrace the chaos four children create, to make peace with our tumble-down house, and just plain live.