A group of community members, family and friends are banding together to help a Fort Lee family, whose 15-year-old son is in need of a heart transplant, through some difficult times, and in the process, to raise awareness about the importance of organ donation.
The Damatos' son, Johnny, has what his mother, Rita Damato, describes on a website designed to raise funds to help the family offset costs associated with his treatment as “an extremely rare congenital heart disease.”
Johnny was born with Corrected Transposition of the Great Vessels.
Damato said she’s “very proud” of her son for having the courage to battle the disease head-on, but, she told Patch, “He needs a heart.”
“He’s been sick since he was a kid, but it never really presented any problems for him until about a year ago,” Damato said. “And then everything just kind of spiraled out of control.”
Johnny, who was active and quite the baseball player before his congenital heart disease caught up with him, playing on three travel teams with dreams of being a pitcher in college, “can't play the game he loves so much anymore,” his mother said.
Instead he’s hooked up to an I.V. 24 hours a day, has to be homeschooled, takes a virtual litany of medications and makes frequent trips back-and-forth to the hospital.
“His whole world has been turned completely upside down,” Damato said. “We have to just pray that a heart comes.”
Damato called the birth of her children “the greatest gift in life,” entrusted, as she was with “the enormous task of protecting my precious little ones.”
“From the moment that these wonderful, beautiful gifts were placed in my arms, I knew I would never feel such happiness, joy and love again,” Damato said. “I thought that nothing could ever take that feeling away from me; I was wrong.”
She said the family was devastated to learn last summer that Johnny’s heart was failing, and that as a parent, she felt the “unbearable” weight of “helplessness.”
“I wanted to take away his pain,” Damato said. “I wanted to wave a magic wand and have his life go back to the way it was a year ago. Unfortunately, that is not going to happen.”
Johnny’s mother said a heart transplant would go a long way toward giving her son “his old life back,” but that this year has been a particularly hard one for Johnny.
Still, she said, her son has taught her and her husband a lot about courage and strength.
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It was in October 2011 that Johnny submitted to Patch in support of his longtime friend, Fort Lee Mayor Mark Sokolich. The title of his letter: “Fort Lee Mayor a Man of the People.”
In it, Johnny wrote that he went to school with the mayor’s son, and that during the time he’d known him, Sokolich “became a very important part of my life.”
“When I first met Mark, I remember being afraid because he seemed to be so big and had a very loud voice,” Johnny wrote in the heartfelt letter. “It didn’t take long for me to realize that the biggest part of Mark was his heart.”
Damato said that with all her son was going through at the time, he took it upon himself to write the letter because he so strongly believed it was important “that people knew the type of person [Sokolich] was.”
“He’s an amazing, strong, courageous kid,” Damato said. “Mark and him have always had a very special relationship, and I’ve always been so grateful that he’s had Mark.”
Julie Liapes, a PTA president in Fort Lee for about 10 years—first at , then at and currently at —is helping the Damatos, who made Fort Lee their home 14 years ago, in their efforts, not in her capacity with the PTA, but as a fellow community member and a friend.
“We’re working on several different fundraisers for him because the community would like to show its support during this diffcult time," Liapes told Patch, saying the website through an organization called “Give Forward” is just the first step in that process.
“This is a community effort,” Liapes said. “Along with that, we’re trying to create an awareness of the need for organ donation.”
And indeed, along with Johnny’s story, pictures of the aspiring baseball player from throughout his childhood and the opportunity to donate and help the family in their time of need, there’s also a link with information on becoming an organ donor through the U.S. Department of Health and Human Services.
“Those of us who have had a brush with death, catastrophic injury or illness of a child, realize more deeply how fleeting life is,” Damato said. “Please tell your friends and family how much you love them, and tell them often. We are very proud of Johnny, despite all he has had, and continues to have to endure. He remains a loving, caring and strong young man. I believe it is the love of his family, friends and strong community ties that gives him the strength to fight.”
For more information or to dontate, visit the website, Hope for Johnny's Heart.