Archive for Advocacy

One Heart: Ava

One Heart: Ava

    Ava Elizabeth was born on November 11th, 2012 with a genetic syndrome called 4Q Deletion.  With 4Q Deletion, part of the fourth chromosome is missing and can result in congenital heart defects as well as other symptoms.  Ava has Hypoplastic Right Heart Syndrome (HRHS) and Pulmonary Atresia.  She is also missing her left hand […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, One Heart

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One Heart: Parker J

One Heart: Parker J

    Parker J. is a two-year-old Heart Hero from Kearney, Nebraska. Like many kids with heart defects, he has several CHD diagnoses. Parker has Total Anomalous Pulmonary Venous Return (TAPVR), Mesocardia, Transposition of the Great Arteries, Mitral Atresia, and Double Outlet Right Ventricle (DORV). In TAPVR, the four pulmonary veins do not connect normally to […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, One Heart

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One Heart: Crystal

One Heart: Crystal

      Crystal Flores is a CHD advocate, public speaker, and Heart Hero from Los Angeles, California. Crystal is 27 and her CHD journey began when she was an infant. Crystal’s mother noticed that Crystal’s skin, nail beds, and lips would turn blue at times and she had trouble breathing. She took the baby […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, In the News, One Heart, Pulse Ox

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One Heart: Ryker

One Heart: Ryker

  Meet Ryker Lee. He is a Heart Hero from Gilbert, Arizona and is one year old.   Ryker was born with congenital heart defects called Tricuspid Dysplasia, Ebstein’s Anomaly, Pulmonary Artresia, and Atrial Septal Defect (ASD). Ebstein’s Anomaly affects the tricuspid valve and can cause blood to flow back into the heart instead of flowing […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, Heroes Helping Heroes, One Heart

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One Heart: Jason

One Heart: Jason

    Jason is three years old and lives in Evans, Colorado. He was born with Hypoplastic Left Heart Syndrome (HLHS) (with an intact Atrial Septum). HLHS is commonly referred to as having “half a heart” because the left ventricle and aorta do not grow properly, and the right side of the heart tries to […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, One Heart

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One Heart: Lydia

One Heart: Lydia

    “Bionic Lydia” is a 3-year old Heart Hero from Bellevue, Nebraska. Ever since her premature birth at 30 weeks gestation, weighing 3 lbs., 4 oz., her life has been nothing short of miraculous. Lydia has Congenital Complete Atrioventricular Block (3rd Degree Heart Block). Heart Block occurs when there is a delay in the […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, One Heart

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The Red Series

The Red Series

written by Devan Neilsen Art is a big part of my life. Whether if it’s collecting it or creating my own, art moves me in a way not many other things do. I really gained an interest in photography when I took a class during high school. From then on, as my gallery kept growing, […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Heroes, One Heart

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One Heart: Heart Angel Noah

One Heart: Heart Angel Noah

  When Noah Maddox was born, he was incredibly blue. He had many severe heart defects, but still managed to thrive and even go home after a 25-day stay in the NICU. Noah was diagnosed with Heterotaxy Syndrome, which usually involves heart defects of varying types and severity. In addition, organs may be in abnormal […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, One Heart

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One Heart: Wesley

One Heart: Wesley

  Wesley is a 22-month old Heart Hero from Amarillo, Texas. Wesley has Hypoplastic Left Heart Syndrome (HLHS), a complex heart defect in which the left ventricle and aorta are under-developed (hypoplastic). HLHS typically requires three surgeries to repair the heart- the Norwood operation, the Glenn shunt (or hemi-Fontan) procedure, and the Fontan procedure. Wesley […]

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Posted in: Advocacy, Awareness, CHD, CHD Awareness Month, Heart Hero of the Month, Heart Heroes, One Heart

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Proclaim the Nation for CHD Awareness

Destany Jones, mother of three, including her four-year-old Heart Hero, Madison, has started a petition for a national proclamation officially declaring February 7-14 as Congenital Heart Defects Awareness Week. The petition is making progress, currently standing at about 8,900 signatures, but it’s not enough. More than 90,000 signatures are still needed in order to receive […]

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Posted in: Advocacy, Awareness, Heart Heroes, Heroes Helping Heroes, Proclamation

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