12th baby in medical history with rare genetic condition says he felt included here

Dubai: The World Governments Summit (WGS) in Dubai witnessed one of its most emotional moments when Nick Santonastasso, a man born without limbs, took the stage to share his story of resilience, mindset, and inclusion on the final day of the summit on Thursday.
“I’m not supposed to be here. I’m not even supposed to be alive,” he told the captivated audience of global leaders and policymakers.
Born in 1996 with Hanhart Syndrome, a rare genetic disorder that left him with only one distorted arm and no legs, Santonastasso was given just a 30 per cent chance of survival at birth. “My parents had a choice—to focus on the 70 per cent chance of me dying or the 30 per cent chance of me living. They chose life,” he said.
“I was the 12th baby in medical history with my condition. Of the 12, eight didn’t survive. So, every day for me is a bonus round,” he added.
Now a globally recognised entrepreneur and motivational speaker, Santonastasso recently made the UAE his home, calling it the most inclusive place he has ever been. "I came here in May for nine days. By day three, I said, ‘I’m selling everything. I’m moving here. I’m never going back,’” he shared, explaining how an experience at a Dubai beach restroom cemented his decision.
“I saw three restrooms: male, female, and one labeled 'P.O.D.' I didn’t know what that meant, so I asked a worker. He smiled and said, ‘Sir, this bathroom is for you.’ I asked, ‘What do you mean?’ And he said, ‘Here in the UAE, we don’t use the word handicapped or disabled. We call it People of Determination.’”
“I felt included here”
A visibly emotional Santonastasso said, “For one of the first times in my life, I felt seen. I felt included. I felt that this was the most inclusive place in the world. And I will do everything in my power to make sure the world knows it.”
His speech also highlighted a stark contrast in experiences. Recalling a flight in the US, he said, "Because I’m in a wheelchair, I get to board first. I took the best seat, right by the window. As the plane filled up, people looked at me, then quickly looked away. No one wanted to sit next to me. In that moment, I felt inadequate. I felt like I didn’t fit in.”
But in true Santonastasso fashion, he found a silver lining. "I asked myself, ‘What’s right with this situation?’ And I realised—I had the most legroom on the plane!”
His message? "When you change the meaning, you change your life. And when you change the meaning, you change the stigma."
Role reversal
During his speech, a powerful video played on the screen, showcasing Santonastasso defying all odds—driving a car, surfing massive waves, lifting weights, and living a life filled with adventure and purpose. The audience watched in awe as the man once told he would never be independent proved that limitations exist only in the mind. The footage was a visual representation of resilience, capturing the essence of what he preaches: that “the biggest disability is a bad mindset.”
Reflecting on his journey, Santonastasso recounted the words his father told him at birth: “Nick, I promise you, I will be your arms and legs until my very last breath.” His parents feared what his life would look like, unsure of what the future held. But standing before world leaders at WGS, he shared a deeply emotional full-circle moment. “Now, I am my parents’ arms and legs,” he said, as images of his parents traveling the world—thanks to him—flashed at the end of the video on the screen.
Santonastasso is the founder and CEO of Victorious International, through which he offers programs aimed at helping individuals overcome limitations and achieve personal and professional success.
Today, Santonastasso is not only a medical miracle, but also a successful inspirational keynote speaker, internationally known bodybuilder, fitness model and an author.
As he closed, Santonastasso left the leaders and the other members in the audience with a challenge: "Are we creating environments that push people to become solution-oriented? Are we unlocking human potential and ensuring no one is left behind?"
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