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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. 

The driver will pick me up once when he gets me to the airport. I’m like, You just need to find the nearest employee and like to hand me over to them. And then from there, they’ll check me in, they’ll take me through, I’ll get on the plane myself and then I’ll have the wheelchair push out to the pickup. So that’s been fun. 

In the early 2000s it was not a conversation about accessibility. I think nowadays there are things with travel that are a little bit more inclusive. Regardless of what the challenge is, like if there’s stairs, I’ll climb the damn stairs. 

I’m like, whatever it takes for me to travel, but ideally we don’t need to go through the hardship or the extra challenges, but I do think there’s a bunch of stuff that helps make it accessible and inclusive. 

The other thing I have run into though is not every excursion is prepared for people like me. We typically have to call ahead of time for excursions and try to paint the picture and be like, this is Nick and like, can you accommodate me? And I’ve done some really sketchy things. I’ve had people say, no, I don’t think we could do this. 

The limbs of your legs, do you have feelings, do you wear anything when you’re walking on them? 

Nick: Yeah, good question. When it comes to feeling in my legs, I still have a bit of muscle left, about a couple of inches worth, especially in my quads. As for padding, I don’t use anything special besides my regular clothes like shorts and underwear. They act as a sort of buffer between my legs and whatever surface I’m walking on. 

I’ve had some adventures, like climbing mountains, where extra padding might’ve been handy, but I’ve managed without it. Sometimes I’ve had to get creative, like using tape on my hands for better grip. 

Regarding whether extra padding would be a hassle, I don’t think so. It might just be a small adjustment, like a tiny shift in comfort. Kind of like how wearing padded gloves for certain tasks could make things a bit easier. It’s something I haven’t really thought much about, to be honest. I’ve been busy with other stuff. But hey, it’s a good question to ponder. Thanks for asking!

Navigating airports can be daunting. How do you manage, especially when traveling solo?

Nick: Airports are like a second home to me. I’m well-versed in getting around, and as long as I’m with an airport employee, I’m set.

What was funny is I was supposed to fly into Shanghai and there was a storm and they rerouted so I landed in a different airport and my agent wasn’t there. With a good sense of humor and the willingness to ask for help, I have managed.  

I have seen some really good people who want to serve and they want to help. 

How crucial is your mindset and the ability to ask for help during your travels?

Nick: It’s vital. Embracing the need for help has been a game-changer, allowing me to tackle various challenges efficiently. It’s about loving yourself enough to seek assistance, not seeing it as a weakness but as a strategy for overcoming obstacles.

Being worthy or loving yourself enough to ask for help. I think oftentimes, with people facing physical challenges or any kind of challenges, there’s a specific frame or mindset that they have, where they potentially feel like a burden, and in some cases, people may make them feel that way.

I definitely think the mindset is important, but also being willing to ask for help because it’s most efficient. And I think oftentimes, someone with a physical challenge may think that asking for help makes them less than, or that asking for help doesn’t make them independent, when in reality, it’s like, whatever is most efficient, let’s do that so we can get the job done and we can get on the journey, you know? 

And I think that’s a big hurdle that a lot of people may face; they just don’t want to ask for help, even full-bodied people, when it comes to challenges they face, it’s like they don’t want to ask for help, but I came to the conclusion that if this is going to get me from A to B faster, I am all in for asking for help and surrendering and letting someone take over.

I think that’s the mindset that we want to embrace. Like, you have a community of people here to support you. You’re not alone. We can all resonate with the same stories. But let’s do this together. And it can be fun. For sure.

We need people to try so we can gather data and see how we can make it more efficient, right? So the path is self-illuminating and you walk the path and you figure out what you need and what you don’t need, so we need more people just attempting and going after it.

And it’s not necessarily about showing the negativity, it’s just about showing what can, like, we need improvements, guys, all right? It’s all about the frame, right? It’s not that we’re failing, we’re just gathering data to make the path more efficient for the people that come next.

Have you always been drawn to travel, and what initially sparked this interest?

Nick: I’m from a small town in New Jersey. My parents didn’t travel much, maybe a few trips here and there.

Then, I broke out of that box when I was 18 years old, and The Walking Dead and Fox hired me to do a prank in Tokyo, Japan on the main actors. So, at 18, I was able to fly my parents first class or business class to Tokyo. That really expanded my horizons because of the culture in Japan.

I actually wrote my senior paper on it because it was the one place that, from my unique perspective, nobody stared at me. Trust me, I get it, if you saw a unicorn, you’d stare too, but in Japan, people were just so respectful and had a different culture, which really opened my mind to the fact that there’s much more out there.

So, after Tokyo, I felt that was a significant trip that expanded my mind, and then as I built the company with speaking, I was a road warrior for three to four years before COVID.

Thank you for joining me on this journey in Part 1! For Part 2, click here, and be sure to follow me on Instagram and YouTube for the latest updates and behind-the-scenes moments!

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