The Zipperstrong Project Raises Awareness of CHD
As we continue through heart month, one amazing program called, Zipperstrong, helps honor families affected by congenital heart disease (CHD) and their stories. The work done by photographer SheRae Hunter helps remind us all that even our scars can be beautiful.
“I am the mommy of a child who is different. All I ever want and need is for others to understand. To understand my family, to understand my son, to understand the hours of therapy, the meltdowns and the uncertainty that we live with daily. To listen and not judge, not offer advice, and not extend pity, but to try understand us,” SheRae Hunter explains. With her work on the Zipperstrong Project, she helps other families, families affected by CHD, accomplish this very thing.
Ainsley — 2 years old — two ventricular septal defects (VSD) closed with open-heart surgery at 3 months.
On the first day of Congenital Heart Disease Awareness Week, the Pediatric Congenital Heart Association of Virginia (PCHA-VA), in partnership with the Zipperstrong Project, shared a set of powerful images capturing the strength, vitality and hope of children fighting congenital heart disease, as well as the reality that many CHD warriors sadly lose this battle each year.
Blake — two years on earth. Forever in our hearts. Transposition of the Great Arteries, AV Canal Defect, Pulmonary Artesia, Heterotaxy.
Every year, 40,000 infants are born in the United States with a congenital heart defect. It’s the most common birth defect, yet many people are unaware. Zipperstrong helps raise awareness of congenital heart disease by giving outsiders a glimpse into the CHD world. Hunter started Zipperstrong in 2015 after becoming intertwined in the lives local CHD families and wanting to make a difference.
Finn — 2.5 years old — heterotaxy, double outlet right ventricle, total anomalous pulmonary venous return and other cardiac issues.
“In my photography, I see these children’s personalities shine through, despite their physical and emotional scars. Their vitality and courage is something to be admired and that is what I hope to capture through the Zipperstrong Project. That is what I want the world to see!” says Hunter. “This year’s Zipperstrong class is truly special. Many of these kids have grown up before my eyes, while others I’ve met for the very first time. All of their stories are so deep and profound that I wish I could share every word. Year after year I am reminded of how extraordinary these kids are.” The 2018 Zipperstrong Class includes children from across the Commonwealth, from the Shenandoah Valley and neighboring West Virginia regions to Richmond, Fredericksburg, and Alexandria. Their ages range from newborn to 11 years old. In all, 15 children were photographed and a handful participated for the first time this year. Most of the children have multiple heart defects, and many have gone through numerous surgeries, with more in their future.
“Through Zipperstrong, SheRae offers the perspective of an outsider and her own artistic vision to tell the story of children living with hearts that have complex structural or functional problems hidden in plain sight,” says PCHA-VA President Laura Carpenter. “Her Zipperstrong Project has moved and captivated all of us at PCHA-VA, and so many more who have never heard of CHD. She has done a great service to the CHD community and we are thrilled to have her as a partner.”
PCHA extends great affection and gratitude to Zipperstrong founder and photographer, SheRae Hunter. Her portraits capture the incredible strength of CHD Warriors in Virginia and allow us to share that with the world! The Zipperstrong Project kicked off CHD Awareness Week 2018 in Virginia, and we are excited to announce Zipperstrong as a program of the Pediatric Congenital Heart Association!
View this year’s Zipperstrong Project photos at www.zipperstrong.org. The photos will be shared through social media throughout Heart Awareness Month and on display at various events across Virginia, including The Hope Marietta Foundation’s Casino Night in Washington, D.C., on February 24. Arrangements can be made to connect with certain Zipperstrong families and reproduce imagery by contacting PCHA-VA Communications Director Renée Lang at rlang@conqueringchd.org.
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CHD is the most common birth defect and a leading cause of infant death. In 2022, 40,000 babies will be born with CHD in the United States alone, joining the 1.35 million new patients born this year around the world. 1 in 100 people worldwide are diagnosed with CHD. Thanks to advances in medical technology and surgical procedures, more adults than children are now living with congenital heart disease. CHD is a chronic, lifelong condition that presents significant challenges for the patient and their family. CHD has no cure. Conquering CHD (formerly Pediatric Congenital Heart Association) exists to conquer the most common birth defect. We engage, listen, learn, and act. We create visibility and empower all impacted by congenital heart disease, accomplishing this through awareness, knowledge, community, and research. Visit our website at www.conqueringchd.org.
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