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Nick Santonastasso’s Journey Unveiled – Part 1

Reading Time: 5 minutes
Nick Santonastasso on the hull of a boat, smiling at the camera

Hi everyone, Nick here. I recently sat down for an engaging interview that delves into my life journey, from my earliest days to my adventures across the globe. In this captivating conversation, you’ll gain insights into my unwavering pursuit of adventure and my determination to overcome obstacles. This is just the beginning, so be sure to stay tuned for the second part of our discussion.

Can you share with us your early life and the rare condition you were born with?

Nick: I’m 27 years old. I was born with a super rare genetic disorder called Hanhart Syndrome. Hanhart Syndrome either leaves the babies with undeveloped limbs or undeveloped organs. So at the time of my birth in 1996 I was the 12th baby in medical history that they’ve ever seen this happen to. And out of the 12 eight of those babies passed away due to undeveloped organs. And so basically the babies are born and they can’t eat on their own, they can’t breathe on their own. Then you later on passed away. When I was born they did tests on my organs and my organs came back 100% healthy. The only thing that was affected were my limbs and so no legs, one arm in a unicorn body.

How do you manage travel logistics, and do you often travel alone?

Nick: For personal travel, my business partner and I handle it. But for professional engagements, an agent ensures everything is accessible. I do travel alone, like a recent trip to Nashville where I was driven. 

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