The Zipperstrong Project returns February 7 to kick off CHD Awareness Week 2019.
Featuring Zipperstrong founder and photographer, SheRae Hunter's portraits, these works capture the incredible strength of CHD Warriors in Virginia.
All the Zipperstrong warriors seen here are born with Congenital Heart Disease. Not all of them have had open-heart surgery, not all have zipper scars. Several here rely on their siblings or CHD Warrior buddies to share their story.
All the Zipperstrong warriors seen here are born with Congenital Heart Disease. Not all of them have had open-heart surgery, not all have zipper scars. Several here rely on their siblings or CHD Warrior buddies to share their story. However, every image is an entire story of CHD. Together they tell why CHD Awareness matters. Research funding is imperative to improve care and save lives. Support, education, and connection helps families cope. Advocacy ensures decisions makers know how many hearts are counting on them to support research funding. That is how PCHA is conquering CHD in Virginia.
The Zipperstrong Story
by SheRae Hunter
Absently, I befriended them on Facebook and started to receive their updates. That is when the raw truth of the struggles and the pain and the triumph and the heartbreak of these families was lain bare to me.
Silently, I became intertwined in the lives and every update of several children born with broken hearts. My own heart began to ache each time one of them caught a cold or had a complication, or turned blue from poor circulation. My own heart cried as I followed one family's anguish when the battle became too much for her 4 month old in the end. Silently, I went with them to checkups, open heart surgeries, and ER visits. I prayed through infections, replacements, strokes and codes. But really, What can I do? what can I possibly do to make any tangible difference at all in these families' lives? I'm sitting here on my computer with my two healthy kids with no comprehension of what it’s like to hand your child to a surgeon with nothing but percentages of success to comfort me. How could I possibly relate to a pregnant mother, with all the hopes of a new mom crashing down before her eyes, as doctors and nurses whisper in the hallway. What can I possibly do?
Then I realized, I can care. Not just the pitiful kind of care where you shake your head and maybe shed a tear then move on to the next post. No, I can try to understand. I can listen. I can try to see these children how their parents see them--fragile and scarred, but brave and mighty. Broken, but perfect. I can attempt to put myself in their shoes to understand the hours in the hospital, the special directions, the last minute change of plans. I can listen and not judge, not offer advice, or extend pity, but just listen. Yes, I am an advocate and I fight for my child, but these parents are warriors that go to battle alongside their children as they wrestle monsters like fear, hopelessness, pain, and death with equal amounts of faith, hope, strength and love.They face decisions no parent should ever have to face, and they value every second of love and life because of it. Their reality is different than ours, and this project is my humble and sincere attempt not only to understand the world of these families and children, but to give you a glimpse into their world, that you might seek to understand as well.
This was the most difficult, but also the most rewarding project I've ever done. Getting to know these kids and these families was absolutely priceless, and I am grateful that they allowed me into their lives so willingly. Please don't let their sacrifices of time and their brave transparency for this project go unnoticed! Please share this... share it on Facebook and Twitter, and Instagram and everywhere, and hashtag it #zipperstrong! If these stories and these images and these words resonate with you, even a little, please share this so that others can also hear and see their stories. Thank you.
SL Hunter Photography
The Zipperstrong Project Archive:
Zipperstrong News Features
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.
Several years ago, I had the privilege of meeting several families that have children with congenital heart defects.
“I can listen and not judge, not offer advice, or extend pity, but just listen.”
- SheRae Hunter
Special thanks to:
The Brave CHD Warriors & Siblings of Zipperstrong
View select portraits on display at: