‘I was called freak, alien, monster. ‘When will this end? Did I make a mistake by not amputating my leg?’: Limb difference advocate says ‘I’m proud to stand out’

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“I was born in Baltimore, Maryland with a condition called Fibular Hemimelia. Growing up, I endured 43 different surgeries. Holy cow, right? Starting at age 7, I had surgery after surgery. As a result of this condition, my right leg was significantly shorter than my left and I was missing my fibula bone in that leg. I was also born with three fingers on each hand. I would tell other kids, ‘I’m Donatello from the Teenage Mutant Ninja Turtles.’

When I was young, physicians talked with my parents about the possibility of amputating my affected leg. At the time, my family had just moved to a new home, and our new neighbor noticed I had a giant lift on my right shoe to make my legs the same length. The neighbor told my parents he was working at the Rubin Institute of Advanced Orthopedics at Sinai Hospital in Baltimore. They were performing a procedure at the time, called Ilizarov Limb Lengthening. How it worked is they would go in and stretch my bone out with various pins and rods over time, so my right leg would eventually be equal length to my left leg.

Courtesy of Alex Barone

So, basically from age 7 to 17, I had a giant cage-looking contraption on my leg 75% of the time. It was A LOT of physical therapy! The procedures were successful each time. But because I was an actively growing child, they would have to keep doing the limb lengthening process. I remember feeling like, ‘When will this end? Did I make a mistake by not amputating my leg and wouldn’t that have been a hell of a lot easier?’ Post-surgery each time I remember feeling filled with joy this could finally be over, and I could get back to being a normal kid, but then the doctor would verbally gut-punch me by explaining, ‘We’re going to have to do another.’

Courtesy of Alex Barone

I was super insecure as a kid and into my early teen years, often wearing long pants to cover up my leg and always hiding my hands in my pockets to the point where my mom sewed up the pockets of my pants to prevent me from hiding my hands. Good momma bear, right? Growing up, I was called a freak, alien, and monster. The names and whispers echoed through the hallways, some of which were cool, but most of them really hurt. I often kept to myself and was more of an introvert watching from the sidelines the other kids playing on the playground and recess while I was recovering from surgery. So much of my childhood during those times of having surgeries, I’ve unconsciously blocked out from my memory. I guess our brains have a way of blocking out pain, tears, pain medication, bullying, and withdrawal. The things that were not so normal to endure if you’re a kid.

Courtesy of Alex Barone

All of those years of physical therapy helped me work on pain modalities throughout the limb-lengthening process. It made me stronger internally and externally. I learned to appreciate the process of healing. When I was a kid, the physical therapists were inspiring to me. I would look up to them because they were so passionate. Flash forward to I was 17, my legs were equal length. I was pain-free. I could finally be active! I was now able to do everything and anything I wanted. And so I ran with it and did it all from CrossFit to Brazilian Jiu-Jitsu training. To this day, at 31 years old, I still work out every single day and strive to stay fit. Not just physically, but mentally. That pain as a kid really took its toll on me growing up, and this was a new outlet to deal with or overcome it.

Courtesy of Alex Barone

When I got to high school, I found myself trying to prove myself to others, because of the lack of friends I had prior and the amount of school I missed over the years due to surgeries. I took a random acting class at school just to check it out. I quickly found out I loved it. It felt like an escape from my own body and a way for me to hide all my insecurities and portray someone else. It made me blossom and grow more confident in my own skin. That’s when it hit me… I’m going to pursue the hardest career possible with hands like mine. I continued taking acting classes, doing plays, and making short films with my best friend, Phil, every single day after school. I also started dating and lost my virginity early on in high school, so after that my confidence shot sky-high. After high school, I wanted to move to Los Angeles right away but didn’t have the guts just yet. Instead, I bounced around a bit. I moved to Wilmington, NC with a friend. I took acting classes, and I started a reggae-rock band, playing all around town. I was finding myself more and more and expanding my horizons.

Courtesy of Alex Barone
Michael Roud Photography

After, I moved to Jensen Beach, Florida to help pursue our family business at the time and sell our products to surf shops down there. My job was to go business to business and pitch them. That alone felt like a master acting class. I started studying at Burt Reynolds’ Institute for Film and TV for a while. I then moved back to Baltimore, where our family business took us. While going door to door for work and doing sales, I was naturally growing as a person and learning how to overcome rejection. I spent a few more years there and after a bad break-up with a girlfriend, I had a realization I have to make the big move to Los Angeles to pursue my dreams of being an actor, otherwise, I’ll always regret it. I packed my bags and drove out to LA within a month.

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Within weeks of moving to LA, I happened to meet a major director, Eli Roth. I tapped him on the shoulder and when he turned around, I said, ‘What’s up Mr. Roth, I am a huge fan of your films. I’m an actor and have these really cool fingers (showed him my hands) that if you ever want to use in your films, I’d love to work with you.’ After talking for a bit, we exchanged info and I honestly thought I’d never heard from him again. A few weeks later, his partner reached out to me and asked if I’d be interested in meeting again. Once I met with them, we didn’t really know what we wanted to do but threw out a few ideas. They told me to put a team together and create an episode of something and we’ll see if we can do something with it.

I got a team together and we created a six-minute episode of an idea we had. We brought it back to Eli’s team and they fell in love with it. We then filmed six more full episodes. This show was called A Little Different. A phrase that resonated so much with me in my life. The show was a docu-series I hosted. I would travel around to meet our guests who were extraordinary individuals with unique talents that never let their disability get in the way. The show aired on a platform called CryptTV and we had reached millions of people. The experience of shooting this show was full circle to me. Here I was using my unique differences to inspire others through a show I created. I could not believe it. The show was a major stepping stone and boost of confidence as a newbie in LA at the time.

Courtesy of Alex Barone

While filming A Little Different, I met my now writing partner, Kurt Yaeger. We sparked a solid friendship on set and have been working together on various projects ever since. As an amputee and an actor also, Kurt and I keep each other motivated. We write, develop content, exercise and stay fit, and constantly network together. He is my best mate, mentor, and ally out here. I’ve come to learn the importance or necessity of having solid friendships and partnerships in both business and in life. Kurt and I have been developing and shooting a comedy series called Tommy & Bobby. It’s a fun little web series about two guys from Boston who do beer reviews from their Ma’s basement. It’s been a lot of fun to film.

Courtesy of Alex Barone

Starting off 2021, I wrapped filming a role on a new limited series for HULU called Dopesick alongside Michael Keaton, which was amazing. It was fun how they wrote in my hands into my character within the show. They let me play around and improv a lot too which was great. It was truly an honor to be and act among the best. If you are an actor, you deal with thousands of rejections. I’ve dealt with rejections my whole life. If there’s one thing people with a disability know how to do, it’s how to problem solve. I continue to find ways to stay creative, motivated, fit, persistent, and HUNGRY. My physical difference sets me apart, and I’m proud to stand out rather than blend in.

Courtesy of Alex Barone

I should also mention another life-changing moment for me. About 6 years ago, I found myself wanting to do more than just be an actor. I wanted to inspire and give back to the community. Because of the show I did, that opportunity led me to an amazing organization called No Limits Foundation: Camp No Limits. This was a place for children and teens with limb loss or limb differences to come do summer camp geared slightly differently. They offered occupational therapy, Physical therapy, and support groups. I came here as a volunteer and fell in love. I could not believe a place like this existed. Where was this place when I was a kid? Everyone was like me: different. From the campers to the volunteers. I was invited back to camps all over the country to be an adult amputee mentor. I was hooked, because not only can I inspire these kiddos now, but here they are inspiring me simultaneously. I get to be the role model to other kids that were born like me.

Courtesy of Alex Barone

Camp No Limits even inspired me to get my occupational therapy assistant license. I was leading these OT groups at camp and talking about my hands and my personal experience growing up. I thought, ‘Hey wait a sec…I should study this stuff so I actually know what I’m educating.’ And so I did. I got my certification as an OTA on top of everything else. I’ve been going to Camp No Limits ever since, and as of 2 years ago, have been hired on as their Community Outreach Coordinator, through which I get to network and speak on behalf of the camp AND be a mentor at camps traveling around the country. BEST JOB EVER.

Courtesy of Alex Barone

Ultimately, working with this foundation has blossomed in all areas of my life. As an actor, a therapist, a speaker, a mentor, and a person. I am more confident as ever in my own skin. I found my people. The better I become, the better my chances of making an impact and opportunities unfold. And ultimately, the combination of sharing my journey of both acting and Camp No Limits on my social media is what led to this opportunity with Love What Matters. Just being me and putting myself out there. I’m learning more and more that when you focus on doing good and on other people and creating positive change, opportunities start presenting themselves naturally. Isn’t that a beautiful thing? Try it, you’ll see.

Michael Roud Photography

Using each of our experiences to make an impact much bigger than ourselves, to me is the greatest form of success. What impact will we make and what will we each be remembered by? I want my story to inspire others. I want to be the role model I wish I had when I was a kid. Now I am starting to feel more and more secure and comfortable in my own skin, my journey has just begun. I have taken all those mean names I was called growing up and the pain I felt and turned it into motivation and inspiration. I am becoming less and less scared about what others think about me or feel about me and focusing more on how I can impact others and what kind of legacy I want to leave behind. Things are moving and shaking, and I am excited about a lot of things right now.

Gregory Zabilski Photography

I hope someone out there who reads this is inspired, relates, or gravitates to something specific I talked about and runs with it. It’s always scary to put yourself out there, especially your most vulnerable self with all the walls down. But, if it makes a difference to someone, even just one person, it is worth it! Thank you all for hearing part of my story. I can’t wait to read about your story next.”

Courtesy of Alex Barone

This story was submitted toLove What Mattersby Alex Barone of Los Angeles, CA.  You can follow their journey on Instagram, Twitter, and their website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this:

‘If you don’t like me because of my hands, your loss.’ Our differences make us unique. We’re enough just the way we are.’: Best friends advocate for limb differences, ‘You’re perfectly made’

‘Have you been biting your fingernails?’ he asked. I got this sinking feeling.’: Woman with limb difference goes on self-love journey, ‘Being different is amazing’

‘I thought you were cute until I found out about your hand.’ This CRUSHED me. I thought I was unlovable.’: Woman with limb difference urges, ‘Be kind to others’

‘He saw my hand. ‘I was born like this.’ He left and stopped talking to me. I knew then I didn’t want to hide it anymore.’: Woman shares limb difference acceptance journey, ‘I have the right to a normal life’

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