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The Warrior’s Way; Living with CHD

www%2Cchdcoalition%2Corg
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The Warrior’s Way; Living with CHD

www,chdcoalition,org

www,chdcoalition,org

www,chdcoalition,org

www,chdcoalition,org

Anthony Baamonde, Staff Writer

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MAHWAH, N.J. – I attended the 11th annual Congenital Heart Defect Awareness Walk, held by the Congenital Heart Defect Coalition, on Sept. 30.

The Coalition holds the walk to help raise awareness and gain money for research and other needs. The CHD Coalition creates Heart Bags for Warriors in the hospital to help comfort them. The Coalition is volunteer-based and no one gets paid – all the money goes to research efforts and heart bags.

This event important to me for a reason – I was born with a congenital heart defect called Tricuspid Stenosis, one of the rarest conditions in the world. I don’t really advocate for a lot of things, but this is something I’m very passionate about.

As someone who has spent days and nights in hospitals, had the surgeries, I have been held back.

I know what it’s like which is why I get involved. I am also part of a support group where we help teens with CHDs and talk to them and give them advice.

The walks are life-changing – for so many years I thought I was alone. Then I went to my first walk in 2017 and realized there are thousands of kids and adults just like me. The butterfly release at the event to honor the angels who passed away was emotional, but I thought how lucky I was to still be here.

CHDs are the No. 1 birth defect in the world and the No. 1 cause for infant-related deaths. They kill more children each year than all forms of cancer combined. CHDs can’t be cured, but they can be spotted early. There are 40 known heart defects, mine doesn’t make the list.

My CHD took a lot away from me. I would love to play sports, but obviously, I can’t, although it doesn’t stop me from going to the gym four days a week. I’ve been bullied, alone and called names because of it. But, it’s given me a lot too: my best friends Harry, Tara and Katelyn who were also born with CHDs. I gained a love of art and films thanks to my CHD. I use all the things that have happened to me in my life as motivation, which has given me a drive for everything I do.

Having a CHD is extremely hard – I just make it look easy.

I get tired quicker than most, and have other reminders that I have this problem when I don’t want to think about it. I always worry about what could happen next. When I get down or upset about it, I listen to music and go lift weights.

I don’t want people to feel bad for me or give me sympathy. All I want is understanding of what I’ve been through.

My CHD doesn’t define me, and it isn’t who I am. I might struggle with it, but I don’t show it. It might hurt, but I don’t feel pain. I share this disease with people like Arnold Schwarzenegger, so I’m in good company.

Don’t be afraid to ask me questions about it or want to learn more about CHDs. Remember, I’m just like you, except I’m a warrior.

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The Warrior’s Way; Living with CHD