A Photo Essay: This Nonprofit Makes Kids With Limb Differences Into Superheroes

James Cave

Albert Manero built his first bionic arm for a child with a limb difference in 2014, and as soon as he saw how powerful it was, he knew he couldn’t stop. Started by Manero during his Ph.D. engineering program at University of Central Florida, Limbitless Solutions , based at UCF, builds vibrant, 3D-printed, often superhero-themed bionic arms for kids with limb differences at no cost to their families. (Bionic limbs, if you’re not aware, are a form of prostheses made stronger by electronics and motors.)

Alex Pring, who was born missing part of his right arm, was the one to receive that first bionic arm Manero and his colleagues built. He was 6 years old at the time, and watching him receive it was an amazing moment for everyone. “We watched him hug his mom with both arms, and it was just incredible to see that it could work,” Manero said. “We realized…it could help a lot of kids.” In fact, he and his team have worked with about 22 families since they first started, and are on track to keep going.

Limbitless Solutions

The Limbitless lab, housed in an 1800-square-foot space in a high-visibility area on campus, is a core part of UCF. It is located near the school bookstore, Knightro’s, a favorite on-campus eatery, and a smattering of dorms. It’s just a four-minute walk away from the alumni center, where an indoor tailgating event takes place before each home football game. The event is for alumni, students and friends, and features food, beverages, an appearance by the school mascot, family-friendly activities and more. The Limbitless team has attended these indoor tailgating events many times as fans, but in late September, for the first time, they participated in the event. There, Limbitless set up a room to showcase some of its bionic arms and its latest technological developments, and to share information about what the nonprofit does.

We partnered with TIAA to tag along with Manero, Limbitless and some of the bionic kids as they showcased their organization at the indoor tailgating event, gave a tour of the Limbitless lab, and of course attended the football game (Knights versus Pitt Panthers). Manero is one of the 100 people being honored as part of the TIAA Difference Maker 100 program , and we are excited to tell his story and the story of Limbitless in this photo essay, below.

Alex Pring, the original bionic kid, now 11, at the indoor tailgating event, demoing one of the video games designed to help Limbitless kids learn how to use their bionic arms.

James Cave

As the bionic arms got more complex, Manero and his team set out to find an easier way to train children on how to use their arms so they could do more than just open and close their hands. They also wanted to help the kids pinch, grasp, use gestures and anything in between. So they partnered with the School of Visual Arts and Design at UCF, which has a robust video game design program, to create video games that interact with Limbitless technology. In the video game, as you flex at different levels or in different patterns, the character will do different superpowers, and we link those superpowers to different ways to utilize the childs limb, Manero explained. That enables us to train children how to use a lot more complex function, but in a fun and painless way.

One of the games on display at the indoor tailgating event for anyone to try.

James Cave

Matt Dombrowski, the art director at Limbitless and a professor at SVAD at UCF, works on creating the video games. It was super empowering. The first time we let the kids play, Peter [Smith, a professor of game design at SVAD] and I both left changed, he said. We were focused and [feeling like], This is what we want to do for the rest of our lives. Albert always says its contagious, and hes right.

This is Alexs third arm, inspired by one of his favorite superhero films. Can you guess which one?

James Cave

Alexs first arm was plain and white because Manero imagined he would want to blend in. After receiving it, Alex immediately went home and painted it orange. We started talking to him about what he actually wanted, and he very much wanted to express himself, Manero said. He was really into Transformers at the time, that was his favorite character. So we built him a Transformers-inspired arm early on and he just loved it. That was when we realized that every kid likes being a character or that type of expression much more than just blending in with something functional.

The new collection of bionic arms on display at the tailgating event. The arms will be delivered through an upcoming clinical trial Limbitless is conducting with Oregon Health and Science University in Portland, Oregon, later this year or early next.

Limbitless Solutions

The new arms are all on a magnetic system, so kids can swap them out depending on their moods. There are four different classes of arms: Warrior, Shadow, Ethereal and Serenity. Annika Emmert, another bionic kid who we met that day, helped design the Ethereal pattern. Instead of building boy arms and girl arms or different designs like that, we wanted to build them around different empowerment words, Manero said. So, the Warrior arm is about being bold and forward. The Shadow arm is about being a little bit reserved and mindful. Serenitys about being calm, no matter the storm. And Ethereals about being light and adaptive.

The model for Alexs current arm on display along with the new line.

James Cave

The clinical trial will last for one year, and costs $10,000 for each childs full experience. Included in the price tag is the cost of the arm, occupational therapy, a travel stipend for four visits over the course of the year to the host site, and more. The goal of the trial is to test the new version of the bionic arm, quantify how well the arm is working for kids and the impact it has on their quality of life. Limbitless can then take that information to the FDA and insurance companies in the hopes that this will become an approved device in the future. The pilot study, which families apply for on the Limbitless website, will have up to 20 children participating.

A Limbitless team member demonstrates to passerbys how the new arms works.

James Cave

The arm has continuously evolved over the last three years. The new version has individual finger articulation, wireless charging and bluetooth to parents smartphones so they can help kids recalibrate at any time. The original arm cost around $350 to make, but since then, the electronics and paint process have gotten more expensive. Still, the hardware of the arms is less than $1,000, and with both designs, it takes between 24 and 36 hours to print an arm using a 3D-printer.

Albert Manero holding court in the lab, which was open for people to tour and ask questions. The walls in the lab are covered with photographs of the Limbitless bionic kids.

James Cave

Kids who have limb differences are, more often than not, not the ones that are encouraged to go and chase all their dreams. And so theyre always told its going to be harder for them, and life is more difficult, Manero said. Its always focused on whats missing, whats broken. The kids go to the grocery store, and people go up to them and say, Whats wrong with you? How did this happen? Its a big loss moment, he added. But, when youre wearing an arm like that, people come up to you and say, How does that work? Howd you get it? It looks so cool. For us, that change in the narrative changes the entire confidence for that child. With increased confidence, it helps their schoolwork, and with all of those different factors, it could radically change a childs life and goals.

Alex with his parents, Alyson and Steve Pring, and his 5-year-old sister, Lilly, hanging out in the lab, a respite from the Florida heat and game-day craziness. The Prings live just outside of Orlando.

James Cave

When Alyson Pring first had the idea to find some kind of arm for Alex, she wanted it so hed have the ability to grip or grab things, as there were very few things he couldnt do. It was specifically for holding onto the bike instead of leaning forward, or holding the tray at school, she said. And I think the older he got, he always knew that he was different, but he needed something that was going to make him feel more comfortable in himself. And thats really what the arm became. You know, 90 percent of its function was just making somebody feel comfortable in themselves.

Alex enjoying a moment of quiet while people tour the lab around us.

James Cave

The arm makes me feel very confident in myself, Alex said. When [people] see my arm, they come closer and ask, Where can I get an arm like that? Alyson Pring chimed in, Well, and you know whats crazy, is right before he got his first arm, I heard him introduce himself, Hi, Im Alex. Im born this way. He wanted to completely avoid the question he knew was coming. And now, even like a year later, I heard him introduce himself, and hes like, Hi, Im Alex. And he said something like, Im a celebrity or, Im famous, or something, and it cracked me up because, to hear the total difference [of] somebody that was like, Please dont ask me, please dont ask me to, I want to tell you all about my story.

Annika Emmert, another Limbitless kid, joined the days festivities late, as she had a soccer game and her family lives in St. Augustine, almost two hours away. The Limbitless kids are spread out, though Alex and Annika are among the few based in Florida.

James Cave

Annika, who is 13 and in eighth grade, was born in Southern California with amniotic band syndrome, a rare condition in which stringlike bands from the amniotic sac entangle limbs or other parts of the fetus and strangle development. After seeing a picture in a newspaper of a little girl with a 3D-printed prosthetic on when she was about 9, Annika expressed interest in getting one of her own. This led her mom, Karon Bryson-Emmert, to start looking into the possibilities, eventually leading her to Manero. Three months after connecting, the Emmerts went down to Florida to see the prototype, and a few months after that, Annika received her arm from Limbitless.

Annika and her family love game days and Limbitless events, and they try to come to as many as they can. Limbitless was a big part of the reason they moved to Florida.

James Cave

Manero and his team had set something up with Clearwater Marine Aquarium so Annika could receive her arm there alongside stars of her favorite movie, Dolphin Tale. I knew I was getting it, Annika said, but I didnt know it was going to be right then. One of Annikas heroes, actor Cozi Zuehlsdorff, was the one who actually gave Annika her arm.

Annika eating soft serve in the presidents suite at the game, where she got to meet the mayor and enjoy a great view of the field.

James Cave

Oh my gosh. It changed so much, Annika said about getting her arm. Post-arm, I [am] just a happier personI have so many things going on in my life, she said. I can amaze people. Before I had it, they were just backing away, they were kind of scared of me, I guess. And so, I amaze people now. I tell them about myself, and I tell them my story, and theyre like, Oh my gosh, thats so cool, I love that design. How did they make it? Wheres it from? And Ill tell them all about it, where its from, who made it, you know. Just as Annika helped design the new Ethereal arm, she helped design this one, too. Its so amazing, I love it so much, she said of her arm.

Annika at the game with her friend from school, Natalie. At UCFs homecoming game last year, she and Julianna, another Limbitless kid, got to cheer on the field with the UCF cheerleaders. These are her pom-poms from that day.

James Cave

When she grows up, Annika wants to be a pediatric oncologist, or in the performing arts something that will allow her to be out there, just to show people, if you lose a limb, or if youre born without a limb, there is more. Your life isnt over. There is more to come, and you will do amazing things, she said, determination in her tone. With that, she offered some advice: If you have a voice, and you want to say something about your difference, or you want to say something about your disabilityget out there. Shout it from the rooftops, cause we want to hear itYour story will probably inspire so many hundreds of thousands of millions of people, she added. Dont let them take you down.

To celebrate its centennial, TIAA is honoring 100 people working to make positive and lasting change in the lives of others with awards of $10,000 each. Albert Manero is one of those being honored. The money he and Limbitless Solutions are being awarded will fund a child during an entire clinical trial. We have partnered with TIAA to put the spotlight on Manero’s story, and on other stories like his. To learn more about the program, and the amazing work the rest of the honorees are doing, visit: www.TIAAdifferencemaker100.org .

Words by Jesse Sposato; Photos by James Cave unless otherwise noted