Team WearRed prides itself on having a board of amazing people who are directly a part of the heart community. Our team knows exactly what families affected by CHD go through because they have experienced it all firsthand!
I began serving on the board of Wear Red of Go Naked after my daughter, Rhiannon Amelia, passed away from a series of heart defects similar to Shone's Complex in June of 2015 at 7 weeks old. Before and after Rhiannon’s birth Morgan and I, with the support of our family, did everything in our power to educate ourselves and plan for her care and surgery. In hindsight though, nothing could have fully prepared us for the fight that we had coming. It was a real battle from the start, but Rhiannon was a warrior, and her fight inspired us to be much stronger versions of ourselves. Her 7 short weeks on this earth changed us in so many ways, one of which was bringing us in contact with some of the strongest people we know, most notably our family at Wear Red or Go Naked. Being presented with the opportunity to join this board and continue the fight in Rhiannon’s name was an honor and a no-brainer for Morgan and I. The CHD community is a very unique one. Nobody chooses to be a part of it, nor would they if they could. Regardless, it’s a resoundingly resilient group of warriors and their families. It’s a group that stands strongly with one another through check-ups, procedures, and surgeries and takes nothing for granted. It’s a group that knows that CHDs are a lifelong diagnosis yet still chooses to be brave in the face of it all, day in and day out. We are just one of so many stories, and it’s so important to us that we do our part to create awareness, and to help local families affected by CHDs in Rhiannon’s name.
On May 5, 2015 our daughter, Rhiannon Amelia, was born with a series of congenital heart defects (similar to Shone's Syndrome). Her condition had been partially diagnosed in utero at the 20 week anatomy scan. Rhiannon stayed in MSCHONY's NICU for almost a month when the doctors finally decided it was time to operate on June 1st. While the operation itself went as planned, Rhiannon had a bit of a tough time reacting to going on the bypass machine and the hours passed very slowly with many doctors closely watching her. Over the next few days and weeks Rhiannon slowly but surely was making strides in her recovery, and we again became very optimistic for her outcome. Unfortunately though, Rhiannon had several large setbacks and although the doctors and nurses did everything they could, she passed away on June 24th, 2015. We are so proud and lucky to have been her parents for those 7 short weeks, but she should have been able to have an amazing life with us and she should have not have had to live out her days in the NICU.
At the end of the day, the fight against CHDs is grossly underfunded, and a huge financial stress for families who should be concentrating on fighting for their children’s life. I am so proud to be on the board of WEARREDORGONAKED to honor Rhiannon and help local families dealing with congenital Heart Defects. It’s amazing be able to help to have these events and help families financially with everyday needs. It makes us feel like Rhiannon lives on and still gets to make a difference in peoples lives.
I began serving on the Wear Red or Go Naked Board in January of 2016, just after the organization was founded. As a long time friend of co-founders, Matt and Danielle Amore, I saw the passion that surrounded the heart community and knew how valuable an organization providing support to local families could be. Hearing the stories of local heart families and seeing the resiliency, strength and love that these families have was truly inspirational for me.
As a ‘heart son,” I had first hand experience in one of the may ways that CJHD could affect a family. My mother had an Ischemic Attack, which is a sort of “mini-stroke” in 2013 that was caused by her CHD. Surgery was required, and everything went smoothly, but I knew there were families that are a lot less fortunate than my own.
As a member of the Wear Red or Go Naked family, I want to see the organization help the local community through the provision of social and financial support. Having worked with students and families with financial need in the past, I am acutely aware of how much financial help can mean to a family, especially when medical expenses are outstanding.
Through Wear Red or Go Naked, I hope to impact the lives of local families and raise awareness to the general public about the prevalence of Congenital Heart Defects. Although I know this is a difficult task, I am up for the challenge.
I am very excited to be joining up with WearRedOrGoNaked!
I am a pediatric nurse and a newly graduated pediatric nurse practitioner. Nursing has been my dream job since I was four years old, when I had a nurse that took care of me after my open heart surgery. I never forgot her—she was the only one I would keep my oxygen on for-- and I grew up wanting to do the same thing for other kids that she did for me. Even on my craziest days at the hospital, I still can think about how grateful I am to be able to do what I have wanted to do my entire life.
My first surgery when I was younger was a huge success, and I spent most of my life as an athlete. I loved surfing and hiking, and spent a lot of time traveling to different countries. I volunteered annually for medical missions in Haiti, and their perspective on life has changed mine forever, for the better. I suffered complications from my last open heart surgery and felt compelled to become more active in having a voice, to fight for more awareness and research. We can always do better and we should try as long as we are able. You never know who it will end up helping.
I am an adult CHD patient, and I feel that we are bonded in this community by things that can keep people together unbreakably. Some things in life you can’t go through without coming out closely connected, and somethings you really can’t go through alone. CHD is full of every emotion imaginable; fear, hope, disappointment, triumph, and love. Wherever you are in your journey, I hope to be able to help WearRedOrGoNaked create a community where you will have someone to share it with.
Much love and hugs ❤
I am a proud member of the Wear Red or Go Naked Board. I came into this position in part because of the support and friendship that I developed with the people of this community when I was suddenly and surprisingly brought into the world of CHD.
Like so many others, my wife Rachel was pregnant and on the 20 week ultrasound our fairy tale world went terribly wrong. The ultrasound tech says just a moment the doctor wants to take a look. Then the doctor quietly looks and says we see something, come with us we’d like to walk over to cardiology and have them take a look. More testing and then sitting in a room waiting, scared to death. Finally the doctor comes in and our world changes. Our perfect baby to be has a heart defect. That moment leads us to more doctors, more tests, learning, worrying, loving, hoping, praying and being brave.
Fast forward and our beautiful baby boy Henry is born. He is born in New York Presbyterian’s Morgan Stanley Children’s Hospital in New York City on November 15, 2013. He is born with Truncas Arteriosis. He is whisked away to another room. It’s a few hours before we get to see him. Tubes, wires, monitors, doctors and nurses busy at work. This goes on for 5 ½ weeks in the NICU with nurses and doctors who take care of him like he is the only baby in the world. More medical problems then we could fathom. Rachel and I try to learn everything there is to learn. We take Henry home on Christmas Eve 2013. Oxygen, feeding tubes, round the clock medication, monitors. Our house and our family are never the same. I wouldn’t have it any other way. Now the worst day… January 2, 2014 and Henry breaths his last breath on earth and goes to God. Our baby is now our angel.
We are forever changed. How do we move ahead? How do we make sure Henry is never forgotten? How do we honor his life and make a difference in the world that I am sure Henry would have made?
Our Wear Red or Go Naked family calls and checks on us. They invite us to their events. They approach us and ask us to be part of a softball game at a park close to our home they are organizing to raise awareness and funds for local families. It is to be called Homeruns for Henry. It is a hot summer day. Rachel and I arrive to see so many people there for the cause. Some we know, some we don’t (We now consider them all family). They truly surprise us with a bench donated to the park in honor of Henry! The plaque on it has his name, dates and the words Be Brave (Our families everyday words since our 20 week ultrasound). I drive by Gibbs Pond Park everyday on my way to work. I find peace and happiness just passing what I now call Henry’s Park.
Fast forward to how can I keep Henrys name front and center? How can I make a difference in other people’s lives that are going through the very struggles this world brings?
My choice was to become part of the Wear Red or Go Naked family. I may as well go all in and become a board member. This family raises awareness for CHD and funds that go directly to local heart families. It takes time, it takes effort and it takes Being Brave to be in this world. If Henry were still here, I would be taking him to school, sports practice, his friend’s house and birthday parties. I would be reading to him, tickling his belly, sneaking him snacks and putting him to bed. I can’t do any of these things now so being part of the CHD world and Wear Red or Go Naked is my way of being Henry’s father. I can do these things for other heart families in honor of Henry. I hope and pray every day that you are looking down on me Henry and that you are smiling and you are proud. I will always do these things and be part of this world for you. Because of you, I hope to make countless other lives a bit easier, a bit better and a bit more loved.
Meet the Vice President of Wear Red or Go Naked, Danielle~
Danielle Amore is a founding member of Wear Red or Go Naked Inc. Danielle is a busy mom of 3 children, Sophia, Chase & heart mom to a beautiful heart warrior Savannah Hope, who was diagnosed with Shone’s Complex is 2012 and had open heart surgery when only a few days old. Through her journey she has strived to help families who are faced with the devastating news that their child has been diagnosed with a Congenital Heart Defect. “I hope that the support other families receive from Team Wear Red ,will help families feel less lost while dealing with such a difficult situation”.
In 2013, my older brother Shayne, my younger sister Allie, and I were so excited to hear that my dad and stepmom were expecting another baby. Another sibling to play with. Another sibling to love unconditionally. Another sibling to complete our tight-knit family. My little brother, Henry, was born on November 15, 2013, at New York Presbyterian’s Morgan Stanley Children’s Hospital with a heart defect called Truncus Arteriosus. He was the most beautiful baby that I have ever seen. But it was gut-wrenching to see him hooked up to numerous wires and tubes. I would come to the city every weekend that I could to sit with him, talk to him, and give him a million kisses. I could have sat in the NICU for hours just rubbing his head of soft, beautiful hair. On Christmas Eve that year, we finally got to take Henry home. Our home was complete. I watched as my parents would change Henry’s feeding tube, give him his medication, and check his monitors. I always thought, “this is something parents should never have to do”. It all felt so unfair. Why does such a perfect little baby have to fight so hard for his life? This is something that I have yet to wrap my head around, and I don’t think I ever will. We treated every day with Henry as a gift. The most amazing gift of all, our completed family. Sitting together for hours, taking turns holding him. It was perfect. On January 2, 2014, Henry took his last breath and went to heaven. A pain that I have never experienced before. A piece of me was gone. It blew my mind that this is something that other families have to go through as well.
The first Wear Red or Go Naked event that I attended was Homeruns for Henry. I was absolutely moved by the amount of people who came to play softball in honor of my brother. There was even a bench donated with Henry’s name and the words that got us through the tough times, “Be Brave”. Words that our family has lived by since the day that Henry was born. I knew that I wanted to get involved. Last year I became the Social Media Coordinator for Wear Red or Go Naked, and quickly became passionate about the organization and its mission to help local heart families, who are going through the same thing that we have all been through. Not only has it been amazing being apart of this team, but it has allowed me to be a sister to my angel brother. Now, I am thrilled to be the newest board member! I am excited to continue to spread CHD awareness, help & support heart families, and share stories of the heart warriors who inspire us every day. I hope that through all of this, Henry is proud and smiling down on me.
For the last thirty years I have battled with Congenital Heart Disease. At my parent’s 20 week sonogram the doctor informed them that their baby girl seemed to have heart disease and that they should consult with a cardiologist. That was the heart-wrenching moment my parents realized that my life would change to a much different path than they ever imagined. With this, my parents met with a cardiologist who is still my doctor today. I was diagnosed with a few different complications. Along with heart disease I was born with an omphalocele; an opening in the skin around my belly button. This is where my intestinal and heart issues have stemmed from due to the skin being open and exposing my organs. After my mom gave birth, the doctor’s repaired the opening and decided not to operate on my heart just yet because I was too weak and needed to gain some weight and strength. With this, I was kept under watch in the NICU for about 2 months. When I came home I needed home-care nursing 24/7 for my feeding tube, medications, and monitoring of my heart.
Fast forward to the age of three. I had been running a fever for a few days and my parents brought me to my cardiologist where she told them to take me to the hospital. The doctor’s decided that I needed emergency open heart surgery to repair my CHD. With this they found out that I had developed a myxoma which is a tumor that was taking up my entire right atrium. During the surgery my doctors worked tirelessly to repair my “broken” heart. They repaired my double outlet right ventricle, my VSD, my pulmonary valve (which received a mesh patch over it), and they removed the tumor. I was in the hospital for about a month recuperating. After my first OHS I had to receive physical therapy, speech, and occupational therapy services for my fine motor skills which were delayed due to my surgery and defects.
On July 5, 2017, I underwent another open heart surgery. I was now 29 years old. I had my pulmonary valve replaced. The mesh patch that the doctors had put in was fixed and made into a place for my new valve. I was in the hospital for 6 days and I had the surgery at Cohen’s Childrens Hospital. Every day as I walked around the halls trying to gain my strength back I was able to see children that reminded me of myself. I completely understood their fears, worries, tears, and anxiety. With this, I was able to reflect on my own life and decided that when I was healthy again I wanted to make a difference and help others and their families with their challenging CHD journey.
Due to the omphalocele and heart disease I have developed gastro-intestinal issues and liver issues which has changed my normal anatomy so much. Throughout my life I have had many other gastrointestinal surgeries. This has now left me with digestion and liver issues and a malrotated intestine. Despite all of this I have to say that I have lived a great life. In my younger years there were a lot of restrictions on me but as I got older I was more mobile and able to participate in more activities with my friends without CHD. My heart disease has brought me to emotionally challenging places but with the help and support of my family, friends, and others, I now view it as a blessing in disguise because it has made me who I am today. With the help of Wear Red or Go Naked I am always available to help others and be an understanding guide through this difficult path we have been given. Life is very tough, we are much tougher
I started Wear Red or Go Naked Inc because as a father, who could not protect my little girl, I did not know what else to do. I wanted to make sure that no other families would ever feel the way that we did. I wanted to make sure that people could have someone to talk to, ask for help, come together with.. and I did not believe it was fair, that so little people know about Congenital Heart Defects. I knew immediately that anyone who was going to be part of Team WearRed would need to be directly connected to CHD.
Savannah Hope was diagnosed in utero while my wife, Danielle, was 20 weeks pregnant. She was born on September 20th, 2012 with Shones Complex. She had Open Heart Surgery on September 26th, which was successful. 3 of the 4 repairs needed for her heart were completed, and she was left with a Parachute Mitral Valve. Her heart was not big enough at 6 days old to do that repair. We bring her to her cardiologist once a year for the rest of her life. CHD is not curable, it can be controlled, and mended, and supervised.. but never cured. Savannah has taught me what strength means, and has taught me to live every day like it is our last. She helped me realize that we should take nothing for granted. I hope that Savannah will grow strong, and be able to share her story to other Warriors, and help them learn the very same things that she taught me. She is my inspiration, and my strength. At 5 years old this little girl has taught me more about life than I could have ever taught her.