Heart Stories

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“My name is Carlie and I have a one year old daughter named Julia (better known as juju). Julia was born with several rare heart conditions including hypo plastic right heart syndrome, VSD, transposition of the great arteries and a straddling tricuspid valve. She has had four Open heart surgeries and is now waiting for a heart transplant. Not only is Julia a heart warrior, but she’s also a stroke survivor! She suffered a massive stroke due to a blood clot that traveled to her brain during one of her open heart surgeries. She has spent her whole life in the hospital and is inspiring others to live their best lives! This is who we wear our necklaces for.” @carliefrullo

 

"Indiana was born on April 17th, 2019 and within hours, diagnosed with a 7.5 mm conoventricular ventricular septal defect; in simplest terms, a hole in her heart.  We were devastated and in shock – she looked so healthy, so happy and yet, there was this.  Our entire hospital stay quickly became a revolving door of doctors and specialists, filling our heads with overwhelming information about congenital heart defects.  Her pediatric cardiologist said that although small VSDs can close on their own, larger ones usually require open-heart surgery. We were told she would have the operation at 6 months old; Indie ended up having her repair at 3 months.  She was borderline congestive heart failure, struggling to eat and breathe, eventually deemed failure to thrive. On July 22nd, surgeons, nurses and other medical personnel from Boston’s Children’s Hospital came to Mass General to operate on Indiana’s tiny heart.  Although her type of VSD is typically found in Tetralogy of Fallot, the other three defects associated were not there.  They did find a PFO, which is a hole present in the wall between the right and left upper chambers of the heart.  Both were patched and she was back to us in the PICU after 5 long hours of waiting. Since the surgery, Indiana has made an amazing recovery and is thriving.  She is eating more than she ever has, her struggle to breathe is non existent and we just couldn’t be more thrilled by the turn around.  We are incredibly grateful for the team at Mass General and Boston Children’s for saving our daughter’s life.  Surgery is not a cure for CHD but she now has a much better chance to live a long and healthy life." @chdandme

 

“My name is Cameron Bishop and I am the founder and creator of Pop Top. I purchased the red A.W.A.R.E. necklace to remember my dad by. He unfortunately lost his life to heart disease.  He gave me the foundation for me to make a difference in the world and be successful. He inspired me to create Pop Top, the fun and easy to open water bottle without a twist-off cap. Children, senior citizens, and those with disabilities can open Pop Top without asking for assistance. Because of my dad, I have all of the confidence in the world to give back and help people live a stronger and healthier life. Thank you A.W.A.R.E” @easypoptops

 

 

“My name is Britton Alyse. I am 5mts old. I was diagnosed with a rare congenital heart defect called Anomalous left coronary artery from the pulmonary artery (ALCAPA) at just 2mts old- This is when your left coronary artery develops wrong and connects to the pulmonary artery instead of the Aorta. At 2mts old I had my OHS on March 22nd, 2019 at Duke University Hospital. My heart defect cannot be detected during pregnancy or sometimes even afterwards; so my parents had no clue. This defect is so rare - 1 in 300,000 live births. ALCAPA is typically caught between 2-6mts of life. The great thing about ALCAPA is that it is fixable via surgery. If the heart has too much damage then a heart transplant may be required. I have been reduced to 3 medications. I am progressing really well. I chose the red A.W.A.R.E. necklace to support ALL heart diseases for babies and adults.” @brittonthewarrior

 

“Hi, my names Elaina and I was born with a heart defect called, Tetralogy of Fallot. TOF is a very rare defect that is vey life threatening in the beginning and all through life. I was diagnosed with it when I was born. I had my first surgery to fix it at the age of 3 months, and my last surgery to replace my pulmonary valve when I was 10. Tetra means 4, and Fallot is the doctor that found it. It was original called the blue baby syndrome. I have 4 official things wrong with my heart. 1. The right side of my heart is enlarged. 2. My pulmonary valve is too narrow. 3. Ventricular septal defect. 4. Overriding Aorta. Trust me I know it’s a lot to process and understand. Being different doesn’t bother me. I love it so much. Cause to be honest who wants to be like everyone else? I’ll be honest, having TOF has completely changed my life and who I am. It’s been a very hard road and I’ve had lots of breakdowns yelling at God why he made me the way I am, and why I couldn’t just die cause I felt so sick and awful. I know now why I am who I am. I’m here to teach others and love on kids and adults, who have disabilities, defects, or any sort of abnormalities. “My scars tell a story of when life tried to break me, but failed.” I believe in that quote so much and it keeps me going. I hope my story inspires you to spread awareness on this cause and to learn more on how to do that. I can’t thank aware causes enough for there support, and necklaces for all different kinds of things.“ @elaina_02_ 

 

“The cause that is important to me is awareness, funding, and research for heart conditions and heart disease. As a 37 year old woman, I just had my very first open heart surgery on February 20, 2019. I was born with congenital Aortic Stenosis and I’m grateful I made it for 37 years without needing much intervention. I was diagnosed with my condition around 18 months old and to look at me when I was diagnosed, you’d never know I had anything wrong because thankfully I looked healthy. I was able to be active growing up: swim team member, dancer, instructor for aerobics and Zumba, collegiate cheerleader, and also to give birth to two healthy children- all things we weren’t sure I would be able to do with my condition. We always knew the day for repairing my valve would come but we weren’t sure when or to what extent the surgery would be. As scared as I was to have my first major surgery, I felt a sense of peace with knowing my surgeon and my team helped me make the decisions we all felt comfortable with and that the latest technology would help this journey. That wouldn’t happen without awareness, funding, and research! From the time I was a little girl and knew I had this condition to the present time, I have seen how much technology has advanced and helped so many to be able to repair, replace, rebuild, recover, and have their lives live on. I’m one of them. My hope is that people will continue to speak up and speak out on this cause because one person can make the biggest difference and create a huge movement! All it takes is one! Having something you can wear every day- your own conversation piece you can wear like these amazing necklaces- helps get the conversation started. I’m excited to have this beautiful accessory to wear on top of my scar!” @mandahelen717

Heart Conditions and Diseases