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Six-year-old Worcester boy gets new heart after four years of waiting

Carlos Rolon, 6, and his mother, Sheena Cossette.
Carlos Rolon, 6, and his mother, Sheena Cossette.Sheena Cossette (custom credit)/Sheena Cossette

Six-year-old Worcester resident Carlos Rolon has undergone multiple heart surgeries since he was born. Now, four years after he was placed on the transplant list, Carlos finally has a new heart.

“He’s doing well, he’s definitely fighting,” Carlos’s mom, Sheena Cossette in a phone interview Friday afternoon. “I think he’s still trying to take it all in. He knows something’s different.”

Cossette was five-months pregnant with Carlos when he was diagnosed with unbalanced atrioventricular canal defect, a condition where heart valves do not form properly and an abnormal hole between the heart’s chambers cause blood to flow to places it wouldn’t normally, according to the Centers for Disease Control and Prevention.

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By the time he was 2 years old, Carlos had undergone four heart surgeries.

“After that, I was told he would need five open heart surgeries by the age of five. That’s when we realized that route wasn’t going to work,” Cossette said.

Carlos was placed on the transplant list in early 2016. He’s been in and out of the hospital since he was born, and has been hospitalized at Boston Children’s Hospital since Aug. 31.

Cossette and Carlos’s dad take turns staying with him at the hospital. She was just about to switch shifts with him on April 2 when the doctors told them they had found a matching donor.

Cossette said she felt a mix of shock and disbelief when she heard the news.

“I was numb,” she said. “It’s so hard to sum up what we’ve been through.”

The next day, Carlos underwent a nine-hour transplant surgery at Children’s, where he’s still recovering. He was initially on a breathing tube in the intensive care unit and still isn’t feeling his best, but Cossette said Carlos is slowly getting better and has even walked a bit.

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“One thing I’ve learned from this is to keep my faith and stay strong,” Cossette said. “Regardless of what he’s been through, Carlos always has a smile on his face and I think that’s where I get my strength from. If he’s not down, how can I be down?”

She said Carlos loves to dance and be silly. He is also is a huge fan of Spiderman, wrestling, and the video game Fortnite.

“He loves his video games. That’s one thing that actually helps us through all this because he stays interacting with people on the outside through the game,” Cossette said.

Once Carlos recovers, he and his family are looking forward to traveling and going swimming together— things he’s never been able to do with them before.

April is National Donate Life Month, which started in 2003 to help encourage Americans to register as eye, tissue, and organ donors.

More than 112,000 people in America are currently waiting for a transplant, according to Donate Life America’s website. Cossette said she hopes Carlos’s story will inspire others to become donors and help save their lives.

“It changes lives on both ends," she said.

Caroline Enos can be reached at caroline.enos@globe.com. Follow her on Twitter @CarolineEnos.