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Virginia  congenital heart defect disease mended little hearts American hearts

#Zipperstrong2019

A program of the Pediatric Congenital Heart Association - Virginia

Charlie

3 Years Old

His comic timing excellent for a three-year-old, and when he is making people laugh you can see a sparkle in his eye.

 Hypoplastic Left Heart Syndrome (HLHS)

“Now when a friend is going for their 20-week anatomy scan I know it's more than just a gender reveal, it's a major medical test that can alter the course of your pregnancy and your child's life. It changed everything to get this diagnosis: our hopes, our fears, our plans for the future.”

~ Charlie's Mommy

#zipperstrong19 

Founded by SheRae Hunter, SL Hunter Photography

Ryan

6 Years Old

Ryan currently rocks out to Guns N’ Roses, Prince and Stevie Wonder.

Torg-Winchester Syndrome, Double Outlet Right Ventricle (DORV), Ventricular Septal Defect (VSD), Pulmonary Atresia  (PA); Post-Fontan

“Ryan…he is special, he has a story to tell and a world to inspire! We certainly have a lot of challenges, but we also have so many blessings! ”

~ Ryan's Mommy

#zipperstrong19

Myracle

14 months

Myracle has the most laid-back disposition, and those beautiful piercing blue eyes gaze into your soul.

Atrial Septal Defect (ASD); Surgery expected in March 2019

“How I wish she didn't have to go through this but she is strong and I know she will be okay. She is in God's hands.”

~ Myracle's Mommy

#zipperstrong19 

Ava

7 Years Old

Ava speaks and writes Spanish fluently as a second language.

Tetralogy of Fallot with Pulmonary Atresia; 2 heart surgeries and 2 cardiac catheterizations

“This experience has taught me is to extend grace to others and assume positive intent. People have so many different challenges and struggles in their lives that aren't always visible.”

~ Ava's Mommy

#zipperstrong19 

Evelyn

4 Years Old

She is an artist. Her favorite thing is drawing rainbows. They are as colorful and vibrant as her personality!

Shone's Complex (coarctation of the aorta, bicuspid aortic valve, mitral stenosis)

“Like any four-year-old, she asks lots of questions and we answer honestly. I'm so glad that our conversations haven't broken her spirit, not even in the least bit. Instead, her pride beams when we discuss her heart.”

~Evelyn's Mommy 

#zipperstrong19

Calvin

Newborn

Forever in our hearts 

His big brother poses with him 

 

Calvin was a fighter. The doctors gave him a 50/50 chance of even making it to full term.

But week after week he continued to defy the odds and amaze his doctors.

Hypoplastic Left Heart Syndrome Variant with Intact Atrial Septum

“I know that he knew I was there with him. I know he heard me say I love you Calvin, mommy’s here, it’s ok.  He felt our love and he felt my arms wrapped around him and he knew he didn’t have to fight any longer.”

~Calvin's Mommy 

#zipperstrong19

Silas

11 Years Old 

 

Friendly-, outgoing-, compassionate boy who LOVES physical activities ... his energy is amazing and he loves everyone.

Single Ventricle Left Heart, Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD)

"This journey is teaching me to lean in harder to God and to not take one second-, one moment, one day for granted."

~ Silas' Mommy

#zipperstrong19 

Bentley

8 Years Old

She has such a kind heart and has taught us how to love and be patient with the world around us.

Dilated Cardiomyopathy/Heart Transplant

We celebrate every milestone or accomplishment, and we throw parties often and for everything!”

~ Bentley's Mommy

#zipperstrong19 

Emilee

 6 Years Old

Emilee loves to sing and someday wants to be dog trainer!

Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries (TGA), Single Heart Ventricle, Atrial Septal Defect (ASD), Aortic Stenosis, Patent Ductus Arteriosus (PDA), Pacemaker

“The hardest thing has to be the unknown. Everyday is unknown with a child with a congenital heart defect.. ”

~ Emilee's Mommy

#zipperstrong19

Caleb

9 Years Old

 

He has a spirited, fun loving nature!

Hypoplastic Left Heart Syndrome

 

"We have developed close relationships with health professionals who care for him. They are like family and are a huge blessing to us!"

~ Caleb's Mommy

#zipperstrong19 

Madeline

8 Years Old 

 

Loves to dance and is into legos. Also, she's getting a bunny in the spring for her 4-H project.

Tetralogy of Fallot with Pulmonary Atresia

"We didn't choose congenital heart disease, but it did choose us. So, what are we going to do about it? We are going to raise awareness, conquer, and persevere!"

~ Madeline's Mommy

#zipperstrong19 

Lincoln

2 Years Old

 A natural comedian that can put a smile on anyone’s face!

Tetralogy of Fallot with Pulmonary Atresia

“Day to day, the hardest thing to contend with is knowing that Lincoln’s fight is not over. There will be more surgeries, procedures, and difficult roads ahead.”

~ Lincoln's Mommy

#zipperstrong19 

Amelia

7 Years Old

 

Independent, strong willed, sassy-sweet little girl who loves cats!

Atrioventricular Canal Defect with Mitral Valve Regurgitation

“I want to tell her to be bold and always be confident. I want her to be proud of who she is and her ‘zipper’.”

~ Amelia's Mommy

 

#zipperstrong19

Miguelangel

5 Years Old 

 

Always happy and silly, so of course his favorite character is Donald Duck.

Transposition of the Great Arteries

"We want him to know that he is stronger than he knows."

~ Miguelangel's Mommy

#zipperstrong  

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!

Stay-tuned for The Zipperstrong Project expansion featuring teen and adult CHD Warriors. 

Give Knowledge,

Give a Voice,

Give Hope:

Your donation helps us continue The Zipperstrong Project and support heart families across Virginia.

View select Zipperstrong portraits on display this February at:

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 16th, 2019