This beautiful girl is a Heart Hero from Shirleysburg, Pennsylvania.  Her name is Grace.  She is four years old and has Tetralogy of Fallot with Pulmonary Atresia, Hypoplastic Pulmonary Arteries, and Major Aortopulmonary Collateral Arteries (MAPCAs).  Tetraolgy of Fallot is a CHD that usually presents with a combination of four related heart defects- an overriding aorta, ventricular septal defect (VSD), pulmonary stenosis and right ventricular hypertrophy.  In Grace’s particular case, her heart defects were even more rare.  There was obstruction of the pulmonary artery, resulting in the diversion of blood from the right ventricle into the aorta.

Grace has gone through an incredible number of medical procedures and surgeries.  She underwent three open-heart surgeries and two cardiac catheterization procedures between December 2010 and January 2013.  In April of 2013, Grace’s family learned Grace needed to be evaluated for both heart and lung transplants, but her case was denied by three major transplant facilities.  Grace’s family worked to advocate for Grace and Nationwide Children’s Hospital stepped to the plate to help save this Heart Hero’s life.

Grace had three more catheterization procedures over the next year, one a life-saving procedure to help Gracie’s lungs to grow.  She had her fourth open-heart surgery last October and continues to have heart caths to help her lungs grow as she grows.  She may never need another open-heart surgery, although she may eventually need lung transplants.

“Having a Heart Hero means that God trusts us a lot,” says Kiley, Gracie’s mother, “We are truly blessed.”  The power of the Heart Hero Cape brings strength, courage, and hope for her child.  Gracie is independent and strong, and her happy-go-lucky attitude (and healthy appetite) has helped her to overcome her CHD!

“We know Gracie’s journey is far from over, but I feel like she can conquer anything.  Nothing will stop my little girl from growing up.”

Gracie’s family enjoys cake and ice cream to celebrate her heartiversaries.  Each date is a precious memory of their daughter’s strength and courage, an obstacle Gracie overcame.

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