Friday marked National Wear Red Day – a day intended to help raise awareness of heart disease.
Parents Matthew and Danielle Amore say they learned that their 5-year-old Savannah had Shone's Complex – a type of congenital heart disease – when Danielle was only 20 weeks pregnant.
Right after Savannah was born, she had to have open heart surgery.
"Instead of planning her footprints and the color of her room, we are planning her operation day," said Matthew Amore.
Her surgery was a success, but doctors at NYU Winthrop Hospital say Savannah will have to go to a cardiologist for the rest of her life.
Congenital heart disease affects one out of every 100 children.
The Amores want to help other families affected by the disease. They set up the organization called "Wear Red or Go Naked." Their goal is to raise awareness, provide support and also help families financially.