Jack
7 Years Old
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Plays hockey, basketball, and baseball. And he loves broccoli! He wants to be Spider-Man when he grows up, or a helper.
Tetralogy of Fallot (TOF) with Pulmonary Atresia (PA)
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"CHD may be a lifelong diagnosis, and challenge for some of these kids, but it doesn’t define who they are. They all just want to be children and do what children do.
We focus on what he can do, which in his case is a lot, and celebrate those things.""
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~ Jack's Mommy
#zipperstrong20
Carter
5 Years Old
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Loves trains. LOVES his big sister. Hates doctors and being alone.
Dextrocardia, Transposition of Great Arteries (TGA), Coarctation of Aorta (CoA), Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD)
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"Carter knows his heart is backwards. He now relates his scar as train tracks and loves the fact that he has train tracks on his body. He does the pledge differently at school, and when people correct him, he politely corrects them.”
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~ Carter's Mommy
#zipperstrong20
#Zipperstrong20
Emmie
3 Years Old
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She loves big! She loves her family, Mickey Mouse, and Moana; she loves to sing and dance and tumble.
She is happy to share hugs with everyone she meets.
Tetralogy of Fallot (TOF)
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“I am a planner at heart and this journey has taught me that life cannot be planned. We have had our hearts broken time and time again, but this journey has also been the most beautiful one I have ever experienced. Every scare, every surgery, every scar is more time together and evidence of just how strong our heart warrior is."
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~ Emmie's Mommy
#zipperstrong20
Ja'dyn
11 Years Old
Wears his heart on his sleeve; very affectionate. Enjoys playing video games, basketball, and flag football.
Hypoplastic Left Heart Syndrome (HLHS)
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"Every child is different. Take the time to learn your child so that you can give them that tailor-made treatment.
Your journey will get overwhelming. Take one minute at a time, use all the resources provided to you, and don’t be afraid to ask for help."
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~ Ja'Dyn's Mommy
#zipperstrong20
Arthur James "AJ"
9 Months Old
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Strong, fearless, always smiling. He is a fighter. If someone says “No.” AJ says, “Yes. And I will show you.”
Diagnosis: Hypoplastic Left Heart Syndrome (HLHS)
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"The greatest lesson our HLHS journey has taught us is to be grateful. We are grateful for every moment with our children. We are grateful for the medical staff that cared for AJ. We are grateful for all the love and support we have received."
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~AJ's Mommy
#zipperstrong20
Smith
6 Years Old
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A little shy, Smith is a helper. He helps around the house and enjoys yard work. He likes to read, swim,
and use his imagination. Loves playing baseball, video and board games, and Legos.
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Tricuspid Atresia (TA)
“Smith’s health has been really good for the past several years, and I try to remember to enjoy this time as much as possible. We don’t know what future health issues he’ll face, so it’s important to enjoy the present as much as possible."
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~ Smith's Mommy
#zipperstrong20
Raina
5 Weeks Old
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The youngest of three children, Raina loves her big brother and sister—almost as much as they love her!
Pulmonary Stenosis
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"When you first get a diagnosis you’re overwhelmed with thoughts, emotions, fears, and there’s so much unknown. Take it one day at a time, or even one hour at a time. Connect with other heart families. I didn’t want to at first, I didn’t understand the value in it or realize the connection I’d feel to others. But now I do and it’s comforting and strengthening to connect with other heart moms and families.”
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~ Raina's Mommy
#zipperstrong20
Alexandra
6 Years Old
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Makes everyone around her feel better when they see her. Her positive energy brings smiles
to peoples' faces every day, whether it’s at the grocery store or doctor’s office.
Multiple Ventricular Septal Defects (VSD)
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“Heart surgery is no different from any number of struggles life presents us. Everybody has challenges and it’s important that we show compassion to everyone we meet. We will always be grateful to the strangers who took time out of their lives to come and visit us at the hospital; to those who prayed with us and those who reached out to let us know they cared.”
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~ Alexandra's Mommy
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#zipperstrong20
Stella
5 Years Old
Chocolate-lover. Hates vegetables. Her twin brother is her favorite person in the world.
Double Outlet Right Ventricle (DORV)
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“When we first received the news, I took everything the doctors told me to heart. I panicked. I shut down. Then, one day I realized, my child cannot advocate for herself. What good am I doing her if I shut down? I began to use the word ‘no’ with the medical teams. I asked for second opinions—even thirds! I worked together with the staff to find the right fit and right team for my daughter. I fight for her every day.
Stella is the kindest, sweetest soul. Her goal is to make any and every one fall madly in love with her (and they do!).”
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~ Stella's Mommy
#zipperstrong20
Dylan
2 Years Old
Charms and melts hearts with his sweet and loving personality.
Complete Atrioventricular Canal (CAVC), Down Syndrome
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The diagnosis I believe has being the hardest part of this journey for us. When Dylan was born he was diagnosed with Down Syndrome and a couple of hours later a complete stranger came in to our room to say our little guy would need open heart surgery once he was a little older. Thanks to God and our amazing team, our baby boy is healthy as can be. Surgery for him was like a switch turned on. God lets things happen for a purpose.”
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~ Dylan's Mommy
#zipperstrong20
Korra
9 Months Old
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Sweet little warrior that is proof that God and good people exist.
Diagnosis: Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD), Patent Ductus Artery (PDA)
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“Take nothing for granted and live life to the fullest. Pray and show your love daily.”
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~ Korra's Mommy
#zipperstrong20
Brie
2 Years Old
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Loves to dance, read books, go down steep slides (she is fearless!) and tries to do everything her older brother does.
Truncus Arteriosus and 22q11.2 Deletion Syndrome (DiGeorge Syndrome)
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"This journey has forced me to let go and trust. Trust that we made the right medical decisions, trust my daughter’s team, trust that her surgeon will repair her heart correctly. It’s not easy putting your child’s life into the hands of others.
Brie’s journey has given life a whole new meaning for us. We have all become better people...We no longer stress about the small stuff, we’ve slowed down, we recognize the beauty surrounding us that we never stopped to notice before…. and we’ve come to realize we still have that ‘perfect’ family of four we always dreamed of.”
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~ Brie's Mommy
#zipperstrong20
Charlotte
4 Years Old
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Charlotte lives true to her redheaded roots. She is a sassy fireball!
Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD)
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“As a new mom, to learn at a routine doctor’s appointment that something wasn’t right with my four-day-old daughter’s heart was traumatizing. I blamed myself, and still do in light of my own genetic cardiac disorder. You always want to go back to that moment when they went ‘sick’ and when you could protect them.
~ Charlotte's Mommy
#zipperstrong20
Surgery is not a cure. Today, there are more adults living with congenital heart disease (CHD) than ever before. It is a life-long disease, yet fewer than 10 percent of CHD adults are getting the specialized follow-up care they need. Ask the CHD adult in your life if they are keeping up with a CHD specialist. If you are the CHD adult, please stay in care!
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Stay-tuned for The Zipperstrong Project expansion featuring teen and adult CHD Warriors.
Ryan
7 Years Old
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Wants to be a dad when he grows up. He adapts to any situation and never asks, “Why me?”
Double Outlet Right Ventricle (DORV), Ventricular Septal Defect (VSD) Pulmonary Atresia (PA)
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“Ryan has had 3 open-heart surgeries and then was diagnosed with an extremely rare bone disease…he is literally one in a billion. Despite everything he has been through, he is a funny, sweet, smart, and social boy. We grew up in a culture that expected perfection. We’ve learned that perfection is subjective. We may not have what other people consider a perfect life, but we have the life that’s perfect for us.”
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~ Ryan's Mommy
#zipperstrong20
Bentley
9 Years Old
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Her nickname is “Gigglebox” because she’s always giggling and smiling. She loves cheer and ballet
and always puts others’ needs before her own.
Cardiomyopathy, corrected with Heart Transplant
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"Every day is a gift that we are blessed to receive. This experience has taught us to always trust God and his plan. Kindness is a big thing in our family because you never know what battles others are facing."
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~ Bentley's Mommy
#zipperstrong20
Hanna
7 Months Old
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Hanna smiles all the time! She loves to play and is always curious about her surroundings.
Total Anomalous Pulmonary Venous Return (TAPVR)
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“We take nothing for granted anymore. The outpouring of love and support from our friends and family was mind-blowing. Knowing what we could have lost made us appreciate what we have so much more. Hanna is every bit a miracle, and we couldn’t t be more thankful for her.”
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~ Hanna's Mommy
#zipperstrong20
Brody
7 Years Old
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Future marine biologist. His happy place is time spent at the ocean and with his best friend, Bryce.
His dream is to save the ocean.
Dilated Cardiomyopathy/Heart Transplant
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“It’s not just big victories that deserve to be celebrated, but little ones, too. Forever grateful for his organ donor. Because of his organ donor, Brody will never have to face anything in this lifetime alone. Everything he does, he does for two.”"
~ Brody's Mommy
#zipperstrong20
Harper
4 Years Old
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A fearless, stubborn, goofy child. Loves to dance and play with her older sister.
Atrial Septal Defect (ASD)
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“We use children’s books to try and teach Harper about her condition. She understands that she’s not alone and able to do everything… anything her sister does. We tell her that her ‘zip line’ makes her extremely special because now her heart is stronger than before."
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~ Harper's Mommy
#zipperstrong20
Charlie
4 Years Old
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Wants to be an Avenger or a crossing guard when he grows up because they help people.
Hypoplastic Left Heart Syndrome (HLHS), Double Outlet Right Ventricle (DORV)
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"I have found that spending too much time imagining the worst-case scenario is unproductive and unhealthy for me. Sometimes the bad thoughts are inescapable but if I find myself worrying about something hypothetical, I remind myself that it isn’t actually happening, which means it is neither immediate nor important. [We talk] to teachers and caregivers about what to do in an emergency, it helps to have basic plans for if things go wrong, but I don’t dwell on ‘what if.’"
~ Charlie's Mommy
#zipperstrong20
Evelyn
5 Years Old
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A.k.a. ‘Flashwater,’ she has the superpower of speed and the ability to control snow and ice. She also believes in unicorns.
Shone’s Complex, (Coarctation of the Aorta (CoA), Bicuspid Aortic Valve (BAV), Mitral Stenosis (MS)
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"Most days I barely remember Evelyn even has a heart issue. She’s a perfectly healthy, smart, active child. We’ve never held her back. But there are also days when it’s hard to forget and anxiety sets in. I try to stop myself from spiraling by focusing on what we can control today…CHD is a marathon, not a sprint. [You need to] save your emotional energy for those moments when you’ll need the extra lift.”
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~ Evelyn's Mommy
#zipperstrong20
Finn
5 Years Old
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Loves sharks, hates mascots. He adores his heart-buddy friends and they love his fun, outgoing personality.
Total Anomalous Pulmonary Venous Return (TAPVR), Supraventricular Tachycardia (SVT), Pulmonary Stenosis (PS), Complete Atrioventricular Canal (CAVC), Double outlet right ventricle (DORV), Heterotaxy
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"We have been shown so many times in this journey that things can turn at any point. We’ve seen through countless other families that things can be going perfectly and then not, in an instant. We are no different. No moment is ever promised. All we can do is the best we can and to be grateful and enjoy every single moment."
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~ Finn's Mommy
#zipperstrong20
Surgery is not a cure. Today, there are more adults living with congenital heart disease (CHD) than ever before. It is a life-long disease, yet fewer than 10 percent of CHD adults are getting the specialized follow-up care they need. Ask the CHD adult in your life if they are keeping up with a CHD specialist. If you are the CHD adult, please stay in care!
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While we invited bereaved families to participate in our 2020 Zipperstrong Project, we did not receive any registrations this year. CHD is one of the leading causes of infant death, especially in the neonatal period. Only 85% of children born with complex congenital heart disease live to celebrate their 18th birthday. We celebrate the strength of heart warriors in the Zipperstrong Project, and we always remember those warriors gone too soon as well.
View select Zipperstrong portraits on display this February at:
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Children's National Medical Center, Washington, D.C.
Inova Children's Hospital, Falls Church, Virginia
University of Virginia Children's Hospital, Charlottesville, VA
The Hope Marietta Foundation's Hope for Hearts Casino Night, Feb 8th, 2020