Welcome to My Walk for 1 in 100 Fundraising Page!
Thank you for visiting my personal Walk for 1 in 100 fundraising page. This is a cause very dear to me as an adult living with CHD but also as a family member who has lost someone. I am extremely passionate about the work I do for the Adult Congenital Heart Association and proud to be a part of an organization that is actively changing the present and future of those affected by congenital heart defects. Below, I've included my story and that of my nephew, Drew.
I was born on June 16, 1987. At four days old, I began turning blue and had difficulty breathing. It was then my parents heard the words Congenital Heart Defect. I was diagnosed with coarctation of the aorta, a narrowing of the main vessel that provides oxygenated blood to the body, a ventricular septal defect (a hole between the bottom two chambers of the heart, VSD for short), and a bicuspid aortic valve (the last pathway oxygenated blood goes through before it goes out to the body; typically has three leaflets and mine had two). At seven days old, I underwent my first surgery to repair the coarctation. At 13 months old, I underwent a second surgery for coarctation. Because of these two surgeries, I have a scar that runs along my left side and around my shoulderblade. During this time, my VSD had closed but in doing so, had began to impact my aortic valve by causing a subaortic membrane to develop beneath it. At 26 months old, I underwent my first open heart surgery to attempt to repair the valve. Unfortunately, this surgery didn't work for long as I developed severe aortic stenosis, which is where the valve doesn't open properly. When this happens, insufficient blood flow goes out to the body. I showed no signs that anything was wrong which made it even more difficult for my parents to hand me over to a surgeon for over 13 hours total when I was just a few months shy of five years old. After 28 days in the hospital, attentive care and lots of prayers, I went home.
Today, I am a thriving adult living with CHD but I am NOT cured. Those born with CHD require lifelong, specialized care. Through my work with the Adult Congential Heart Association, I educate patients and parents, provide resources to our members, connect those needing support with one of our Heart to Heart Ambassadors and work with volunteers to increase awareness of ACHA and CHD across the U.S. I walk for the nearly 3 million people, 1.5 million of those being adults, who live with CHD.
But I also walk in memory of my nephew, Drew, who was born with Truncus Arteriosus, a defect where the pulmonary (right side of the heart) and aortic (left side of the heart) vessels are one large 'trunk' rather than two separate sides leading to the mixing of oxygenated and deoxygenated blood. Surgery for this defect involves placing a conduit in the heart to create separate blood flow to the lungs and the truncal valve essentially becomes the aortic valve. Drew underwent four total surgeries during his lifetime, with his last at age 17. Shortly after his 18th birthday, he was without insurance as this was in the days before the provisions of the Affordable Care Act allowing young adults to stay on their parent's plan until age 26 and ensuring protections for those with pre-existing conditions. Although our family tried desperately to get Drew into an appointment with an Adult Congenital Heart Disease (ACHD) center, having records in multiple places and being without insurance made that task very difficult. On November 10, 2013, Drew woke up, went to breakfast and the grocery store with my parents then left for his weekly soccer meet-up with some friends from church at a local park. Less than 30 minutes later, my parents got a call that would change our families' lives. Drew had went into cardiac arrest and despite valiant efforts by bystanders, including his friends, and paramedics, he could not be revived. He was lost to care for less than two years.
Less than 10% of adults with CHD are in the appropriate care with a cardiologist who specializes in adult congenital heart disease. Education of both parents and patients early on is crucial to ensure continuation of care into adulthood. Not only that but ACHA is paving the way for ACHD care now and in the future with its Accreditation Program which sets standards of care, research program, online clinic directory, and educational offerings in the form of webinars, PDF and printable Q&As, and regional and national conferences. Please consider a donation to help us continue this important work on behalf of adults like me and in memory of those like Drew. No donation is too small and it all adds up to make a HUGE difference for the 1 in 100 affected by congenital heart defects. Thank you.
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