City
Simpsonville

My Story
Evely's heart story is unique because there were no signs of any issues during pregnancy. Even when she was born and we discovered she had a rare disease called anophthalmia, meaning she was born without eyes, I thought blindness would be her only struggle. Evely never showed any traditional symptoms related to her heart, but my mother's intuition sensed something was wrong. Her heart health was so complex that a team of 30 cardiologists gathered to discuss the best treatment options for her. Evely has undergone several life-saving heart procedures. We are incredibly grateful for a mother's intuition and an amazing team of doctors. Over the years, Evely has been diagnosed with multiple complex conditions, including microcephaly, a rare form of epilepsy (petit mal), hypotonia, severe intellectual and physical disabilities, an unknown endocrine disorder, and an unidentified genetic disorder. Evely is a wheelchair and g-tube user. Evely's journey is very rare and complex. She is our one-of-a-kind girl.