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Nothing holds her back…

Danica Aguiar is what you may call a typical 12 year-old. Except for her heart condition.

Nancy Aguiar was not aware that her daughter had any heart issues before she was born, but at just three days old, they discovered that she had an enlarged heart and was rushed to Boston Children’s Hospital, MA.

Through extensive testing, it was determined that Danica was born with transposition of the great arteries. The doctors explained to Nancy and her husband, John, that Danica’s aorta and pulmonary arteries were attached to the wrong ventricles and that she would need immediate emergency surgery to correct this. To further complicate the surgery, Danica had only one coronary artery, had holes in her heart walls – ASDs and VSDs – and a bicuspid aortic valve – which lead to moderate regurgitation. “There are no words to describe what went through my head and my own heart when I learned how sick my little girl was,” Nancy painfully recalls. “You know these doctors are the experts, but how does a parent say ‘okay’ to surgery on a newborn. But how can you not do everything to help your baby girl.”

Danica had her first open heart surgery when she was just a week old.

Fast forward 12 years and you now see a strong, happy, and active young lady. Danica is a cheerleader and plays on two basketball teams. “Basketball is her informal stress test,” Nancy says with a proud smile. “Her cardiologist, Dr. Lloyd Feit, has stressed the importance of encouraging Danica to be a normal kid and not asking her to hold back. His advice has given me the courage to let her discover and test her limits, to not be afraid for her.”

Attending Gabrielle’s Heart Camp has been instrumental for Danica. “I know her confidence in talking about her heart condition and not being ashamed of the scar on her chest is due to seeing other kids just like her and knowing she is not alone,” reflects Nancy. “It was so hard to let her go on that first day, but now that I see the lifelong friendships she made with campers and counselors, I know it was the best decision we ever made.”

If you ask Danica about her condition, she will tell you with a knowing smile “my heart is special because other kids don’t have heart problems. It doesn’t hold me back. I can do anything my friends do.”

Danica will need additional procedures in the coming years to correct her faulty valve issue. However, thanks to research and advancements in technology since her birth, these will be by catheterization, rather than open heart surgery. Nancy knows this will be a different experience for Danica and their entire family. “Thanks to the amazing care she received, she will face these procedures with confidence and strength.” Nancy also knows that Danica’s camp friends will be a huge help through her surgery and recovery. “They won’t be afraid to visit her in the hospital, or to ask questions. They will just be her friends.”