'Dead' man living: Disabled teen-turned-Internet star 'lives by inspiring others'
When Nick Santonastasso was 2 years old, his father left him alone on the living room floor while he went into the garage for a moment, only to hear an odd clanking noise a few minutes later.
Nick was born with Hanhart syndrome, a rare birth defect that left him with no legs, an undeveloped right arm, and a left arm with one finger. Doctors told his parents that his mobility would be limited.
“I opened the door from the garage, and Nick had pushed his wagon up next to the table, climbed into the wagon, then gotten up onto a chair before pushing himself onto the table,’’ Mike Santonastasso told TODAY.com. “He was on the table, watching MTV and dancing. Since he was 2 years old, he’s been shocking us with the things he does.”
Norman Reedus, a star of the popular TV horror drama "The Walking Dead," can now count himself among the people Nick has shocked — except this time it was intentional. In an online video that has gone viral since it was posted Jan. 17, Nick, now 17, is made up to look like a zombie and pops out from underneath a table to startle the unsuspecting actor.
“I was pleased with the reaction because, honestly, I didn’t think I was going to get a reaction out of [Reedus],’’ the senior at Central Regional High School in Bayville, N.J., told TODAY.com. “He’s so used to seeing people made up as zombies all the time, but it worked out great. My goal is always to inspire and entertain, and I knew this one would be big.”
While a series of Vine videos and his latest prank with Reedus have made Nick an online star, those who know him will tell you there is much more to him than that. He is a wrestler on his high school team, a singer, a musician, and most of all, an inspiration to others. He has been that way since he was a young child, even appearing on TODAY at age 12, where he met up with his favorite player, former New York Giants star running back Tiki Barber.
“He lives by inspiring others not to sit idle,’’ his father said. “He can’t change who he is, but he’s not going to stop living because of that.”
Nick's latest adventure began when he and his parents were flown to Tokyo earlier this month by Fox International, which was launching a social media campaign to promote "The Walking Dead" in 125 countries. He joined forces with special effects guru Greg Nicotero, who designs the zombies for the show, and "Walking Dead" star Andrew Lincoln to give Reedus a scare that had him cursing before he gave Nick a good-natured hug for a job well done.
Nick spent two hours in makeup before springing into action to scare Reedus, who plays zombie apocalypse survivor Daryl Dixon on the show.
“He’s clearly a very inspiring young man and a 'Walking Dead' fan, so he was the perfect combination to launch the campaign with,’’ Alexandra Marinescu, vice president of marketing for Fox International Channels, told TODAY.com. “He’s all about inspiring people, disabled or not, and just spending time with him and his family, you can see he’s really committed to it.”
The video, which has been viewed more than 6 million times, is only the latest zombie prank from Nick. He came to the attention of Fox International because of a series of viral videos he had posted on Vine in November. His friends made him up in rudimentary zombie makeup and filmed him scaring unsuspecting shoppers in hilarious fashion at a Walmart near his home in Bayville.
In one video, an initially terrified woman smacks him with a roll of wrapping paper, and in another one, a man throws his shopping basket at him in shock. Nick said he was able to calm both of them down afterward. Reedus himself even promoted the videos on social media after "Walking Dead" fans brought them to his attention. Fans of the show also started a petition to get Nick on an episode.
“I got into Vine and thought, ‘What can I do that I would be best at?’’’ Nick said. “I wanted to do something that no one else could do, and I came up with a zombie. Some people were like, ‘That’s fake, I see his legs and his pants,’ and I was like, ‘Are you kidding me?’
"I did something that catches people’s attention, because you don’t really see people like me around.”
Nick is the youngest of four children, and his parents found out about possible complications with his birth when his mother, Stace, was in her third trimester.
“We figured, let nature take its course, and we would prepare our children for what their brother would be and put it in God’s hands,’’ Mike said.
Doctors told his parents that Nick was only the 12th case of Hanhart syndrome diagnosed in the world when he was born. Hanhart syndrome can cause an incompletely developed tongue, missing fingers and toes, malformed arms or legs and an extremely small jaw, according to the U.S. Department of Health and Human Services. Children may have some but not all of the symptoms, and the cause is not fully understood.
Nick’s father said eight of the 11 other people who had Hanhart syndrome when Nick was born have subsequently died, mainly from complications involving their heart, liver and lungs.
“I’ve never met anyone with [Hanhart syndrome],’’ Nick said. “Sometimes I wish I was normal, to be honest. Then I look at what I’m doing and how many people I’m inspiring, and I am pleased with what I’m doing. It’s just that everyone has their bad days now and then.”
From that moment he made it up on the table to dance to MTV at age 2, Nick has been on the move. He used a skateboard to get around while growing up, learned to play the drums, and has tried out seemingly every sport from football to dodgeball to Ping-Pong. He even went scuba diving a few years ago. He recently got his driver's license, and the family is in the process of modifying a car for him to use.
He also has become accustomed to the stares and whispers of strangers when they see him. He has prosthetic legs, but does not use them in public, saying "it just wouldn't be me." In school, he uses a wheelchair to get around the hallways.
“When I went to Japan [for the prank], everybody is so polite that even in a major city like Tokyo, I never got stared at or got dirty looks,’’ he said. “But here, it’s an everyday thing I go through. My friends hate it, but I don’t want them to get riled up. The stares, the comments, they go in as pain, but they come out as me trying to give other people strength.’’
After some prodding from friends and Central Regional head coach Chris Loveland, Nick came out for the wrestling team last season as a junior. As a sophomore, he had undergone a surgical procedure to trim the bone and add cushioning to his malformed right arm, where the bone was growing faster than the skin and creating a painful condition. The procedure allowed him to give wrestling a try without pain.
He wrestles in the 106-pound weight class while weighing only 85 pounds, the minimum allowed to compete by the New Jersey State Interscholastic Athletic Association. He weighs 20 pounds less than almost all of his opponents.
“Wrestling is a lesson,’’ Nick said. “I grew up with failure. Failure made me who I am, and in wrestling, there’s a lot of failure. I’ve had a lot of losses, but you just learn from it and get stronger. You realize who you are, and how strong you are, mentally and physically. It’s made me a better person.”
“He wrestles mainly by feel, and he gets mad when he thinks his opponent is letting him win,’’ Loveland told TODAY.com. “Last year, he won his first junior varsity match by decision with a nice takedown over another first-year wrestler. We’re high-fiving him and picking him up, and he’s like, ‘No way, he let me win, this is crap.’ The coach came over to me and was like, ‘I didn’t tell my kid to let up. Nick won the match.’’’
Nick’s only win on the varsity team this season has been via forfeit when an opponent had already clinched a victory. However, just avoiding getting pinned or battling an opponent to a decision is practically a win for him, because it helps the team and frustrates opponents. It also serves another purpose in Nick’s mind.
“I think people have respect for me because I do it, but I also do it because someone who doesn’t think they can wrestle will look at me and go, ‘Wow that kid has no legs and he’s wrestling, so let me try it,’’’ he said.
“When I’m having a bad day, I think, ‘Look at Nick, and he’s doing all this stuff,’’’ said wrestling teammate Nick Tomaio. “With how much he’s overcome just to come out for the team and do all the stuff in his life, I can work harder.”
Thanks to his newfound online fame, Nick also has gone from a curiosity at matches to somewhat of a local celebrity.
“He’s the talk of weigh-ins,’’ said Central senior teammate Dan Buhagiar. “Everyone’s like, ‘It’s Nick from Vine.' We’re like, ‘Yes, that’s him.’’’
And it's not just wrestling matches where he has become a center of attention; Nick now gets stopped in the mall with friends, eating dinner out with his family and in the hallways at school.
“Some people that don’t know me in school will now say hi, and then there’s some people who say, ‘Oh, he’s just doing it for attention,’’’ Nick said. “I’m like, ‘I’m just living my life.’’’
With more followers as a result of the prank on Reedus, Nick takes his mission even more seriously now. He even had the word “inspire” tattooed down the left side of his torso last year. His parents will often walk into his room to find him in front of his webcam, talking online and encouraging someone struggling with disability or depression. He also has started doing motivational speaking.
“I attracted people in a different way, and now that I have my fan base, I can inspire in other ways,’’ Nick said. “I could talk about my life and inspire you, or I could also make you laugh at the same time.”
He admits the bar has been set high with the prank on Reedus, but rest assured: Nick is hard at work devising new ways to entertain.
“Nick is not somebody to sit on the sidelines, and never has been,’’ his father said. “He comes up with these little creative ways to get himself out there and try to live life to the fullest. He keeps us all wondering what he’s going to do next.”