Zain loved his swing, pacifier and to be swaddled. He loved to be held and was always smiling and never cried, unless he was naked of course! Everyone who met Zain was inspired by his courage and resilience.
Our son Zain passed away on June 9, 2017 from Pulmonary Vein Stenosis (PVS), a rare vein disease which currently has no cure. We wanted to do something special to honor Zain and bring together friends and family or as we like to call them Zain’s Warriors, who helped us fight for him.
For the seventh year in a row Zain's Warriors will be participating in the Children’s National's 2024 Race for Every Child at Freedom Plaza in Washington, D.C. on Saturday Oct 19th. We will be walking to honor the strength Zain exhibited throughout his short but meaningful life.
In utero Zain was diagnosed with a rare Congenital Heart Defect (TAPVR) at Children’s. Within hours of being born Zain was rushed to Children’s for open heart surgery. After which he spent the next 67 days at Children’s before coming home to be with family and friends for his final two weeks.
Pulmonary vein stenosis (PVS) is a rare and serious condition in which there is a blockage in the blood vessels that bring blood from the lungs back to the heart. This blockage is caused by an abnormal thickening of the walls of the veins. While PVS can occur in a single pulmonary vein, it most often affects multiple veins at the same time. Zain had PVS in all four of his pulmonary veins, which ultimately took his life.
In honor of Zain, and to ensure that no one other family has to go through the anguish and heart break that Laura and I went through, we will be raising money for the Rare Disease Research fund. It is our sincere hope that one day soon we will find a cure for this horrible disease.
Thank you for helping us honor Zain’s memory and supporting Children’s National . Your support will help us give every patient at Children’s a chance at a healthier future.
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