To celebrate American Heart Month and to conclude Congenital Heart Defect Awareness Week, a local family is asking the community to wear red to shine a light on heart-related illnesses.
Throughout the whole month of February, the nation acknowledged Heart Month and from Feb. 7-14, those who have been affected by CHD have been sharing their stories.
One miracle story comes from the Amore family, of West Babylon, with their 7-year-old daughter, Savannah.
“When I was pregnant with her at 20 weeks, she was prenatally diagnosed with half a heart,” her mom, Danielle told GreaterBabylon. “But when she was born, she was diagnosed with multiple heart defects.”
Those defects resulted in Shone Complex, a diagnosis that is made up of four or more issues with the heart. The young parents had to make a scary decision, and at six days old, they agreed to a surgery that left the infant in the hospital for 16 days but ultimately saved her life.
“We didn’t have a big support system within the CHD community back then,” she said. “We didn’t know too many people going through it … social media changed that.”
Although the family was scared, angry and sometimes bitter, they took a bad situation and decided to turn it into something good.
“My wife made a page before Savannah was born and it was a way to tell people what was going on,” her father, Matthew, said. “That kind of started the awareness a little bit. We made up this hashtag, #WearRedOrGoNaked, and we were basically saying that if you’re not going to wear red for CHD, then you might as well run naked.”
The pages on social media became so popular that the Amores decided to turn Wear Red or Go Naked into a nonprofit that will help other New York families who suffer from CHD.
“We had our first fundraiser and we killed it,” he said. “Now five years later, we have a board of nine trustees, have raised over $120,000 in five years, we’ve made such nice friendships from it.”
Although some of the families who Danielle and Matthew have come to love have had their own tragedies, they make sure they honor passed Heart Warriors with special fundraising events.
Those fundraising events have helped pay for food, hotel stays, vacation time, travel, mortgages, medicine and scholarships (for adult CHD students).
“One in every 100 children have CHD,” added Matthew. “You definitely know somebody and you may not know that they have it, but you would never know… look at Savannah.”
Their 7-year-old is one of the lucky Heart Warriors having to undergo just one surgery in her life. Now, the second-grader loves to go to dancing classes and run around with her two siblings at home.
“What people don’t realize about CHD is that it never goes away,” her father said. “Savannah is going to have it until she’s not here anymore… until we’re not here anymore.”
So to continue raising awareness Team Wear Red is continuing to spread the word about what they do. “We provide support and any funds needed from the time they’re born until they don’t need us anymore,” Matthew said. “It’s been a very busy five years.”
And Savannah has fun getting involved, too. “I’ve made a lot of friends and going to the events is a lot of fun,” she said.
Her favorite is Homeruns For Henry, an annual basement game that honors a child who died from a congenital heart defect.
“She knows she’s been through a lot, but she doesn’t have any memories about going through it — which I’m glad about,” said Danielle. “And the kids love the fundraising aspects… if that’s anything we’ve taught them, it’s that they’re giving back.”
This Valentine’s Day is Team Wear Red’s day of acknowledging CHD. The team is also preparing for their fifth annual 5K held in May.
“It’s all about giving back and trying to get people to realize how important local nonprofits can affect your neighbor,” said Matthew.
To donate and find out more information on #WearRedOrGoNaked, check out their site here.
Above photo of Savannah Amore by Julianne Mosher