One day, David Aguilar was playing with LEGO. A big fan of this toy, he began fitting the pieces around his arm. A small arm, with an equally small, underdeveloped hand. David suffers from Poland syndrome, and his right arm has never fully developed. But that day, as he sat playing with his blocks, instead of constructing a helicopter, as he had set out to do, he wound up building an arm. “It was pure chance. I just wanted to building something with what I had, and I remember I started to put the pieces around my arm”. And the rest is history. David was young at the time: just 9 years old. And was eager to do new things.
I don’t know what I was thinking at the time, but I ended up creating a shell that kept the cover in place and stopped it from falling. It was fun to see how it worked, and, from there, I used pieces with horizontal holes to insert a wire that, when I moved the arm, opened and closed the clamps. And, low and behold, without intending to, I wound up building my first prosthesis. I was 9 years old.
As a child, David always showed a penchant for ingenuity: from a fan cap, to building everything you can imagine out of LEGO: helicopters, planes, motorcycles, cars, boats… And an arm. Though it’s hard to believe it was just “chance”.
I was born like this, and my personality developed as a result of this shortcoming. I’ve always thought that, if I had my other arm, I just wouldn’t be me. My parents and I started talking about prosthetics after I said, “Hey, those arms are cool, because they’re mechanical and make you look like a robot”. I thought it was funny. But of course they’re extremely expensive, and some of the models made using a 3D printer –which are cheaper– don’t have electrical parts that detect muscle movement and help move the fingers. I convinced myself I didn’t need one.
Until one day, while playing with LEGO, I took apart a helicopter without thinking specifically about building a prosthesis. I just wanted to make something; whatever popped into my head at the time: I don’t know. It could have been a building, or a boat… I had watched a YouTube video of a girl who’d made a leg from LEGO: “Why couldn’t I?”.
So you said, “I know, I’ll take it apart and make an arm”…
No, no. It wasn’t like that. The only time I was conscious of what I was doing was with the second prosthesis, the blue one; the red one, which was the first one, was pure chance. I wanted to create something that could help me and be part of me, and, as I linked the blocks together around my arm, I just started making this appendage from LEGO.
How did you feel at the time?
Wow! How do I explain it? It was incredibly satisfying to be able to grasp objects with an appendage that wasn’t real. It was fantastic. But what really astonished me is something that happened about a year ago, when I made another prosthesis, this time, like I said, on purpose. One of my dad’s friends gave me a LEGO plane as a gift, but all I saw was an arm. It also had a small motor. So I built it, and put it on. And I went up to the mirror, took my shirt off and, just fooling around, started posing like a body-builder, because I was astonished to see that a toy could turn my dream into a reality. And now, since I’ve started going to the gym, I have the feeling that, when I train, I’ve suddenly grown an arm. You can’t imagine how I felt in that moment.
One day, his father made a short video and posted it on Facebook. “I’m not very active on social media, but he really knows what he’s doing. He took some photos of me, a few videos, sometimes without me even realising”. And he mentioned the Danish construction toy company, which soon contacted us. “Ferran, we’re speechless… David’s strength and perseverance are what make us proud and are the reason we want to continue to give all the children of the world the opportunity to play with our blocks. Thank you very much for sharing this with us. A big hug”. That was just under a year ago, after I’d made the second arm, the blue one, with a motor so that it could pick up heavier things. It was the starting point of a tour that still hasn’t finished: CNN, National Geographic, other television and radio stations, newspapers… From both near and far: Andorra, Spain, France, Germany… Croatia, the United States, Canada, Malaysia, Peru, Greece, Russia and China. From Andorra to the world… “I never thought my story would have so much repercussion”, especially when you think where it all started.
When I was young, the others would sometimes call me names, “look, he’s only got one arm!”, they’d yell, or laugh at me and make jokes behind my back… But, truth is, I already felt different, physically, going to a school where no one else had a physical condition… To a certain extent, I didn’t really care. The only time I ever felt pushed aside was the day someone very close to me said something very hurtful…; that it was my mother’s fault. I was furious, and the only thing I wanted to do was to shut them up… I ended telling them everything and, look, it’s even difficult for me to talk about it now…; I told them to take back what they’d said, that it was completely inappropriate and couldn’t be further from the truth.
Did they understand?
Yes, they did. That’s why I want as many people as possible to understand: people see us as people with problems, and ascribe us a sense of blame that isn’t real; unless you lose your leg in a drunk-driving accident. Then perhaps you could understand; but I’ve never felt that way. And we need to make people understand that those of us with problems like this are actually completely normal: we have trouble leading a normal life, but, if we put our minds to it, we always end up pulling it off.
Do you notice people looking at you?
Yeah, sometimes. People always stare at me in the street. In Andorra, I think there are three people with the same condition; though two of them don’t have Poland syndrome. As far as I know. But, of course, I was national news; and it’s not like I was in the news every day, but in a small country like this news travels fast. And you hear people explaining it to their kids: “look, that’s the boy who was born without an arm”. Before I would always hide my arm: I’d put it behind my back, cover it with my sleeve or put it in my pocket. But as you mature you realise that there’s no use hiding, because if you do it your whole life, aside from getting really tiresome, you never actually show who your really are. And now, even though people stare, it doesn’t bother me. In other words, I do sometimes feel that people look at me, and kids –because they’re naturally indiscreet– still say, “look, Mum, a boy without an arm. What happened to him? What happened to him?”. But now I sometimes stop at talk to them. It’s fun. At first, as a joke, I tell them I lost it fighting a shark.
I bet they’re impressed…
Ha, ha. Yes. They are! But when I tell them the truth, that I managed to make an arm out of LEGO, they’re eager to play as well. Sometimes my parents’ friends bring little children over the house, and they’re amazed by all the LEGO figures on the shelf in my room. And I let them play with them, and touch the arms…; it doesn’t matter if they break. They’re easy to reassemble. I have a lot of fun playing with the kids, and putting the pieces back together.
Does all the media attention bother you?
No, not really. Because I like it, and it helps boost my self-esteem. Because going from being somebody nobody recognises to someone people look up to brings a great deal of personal satisfaction. Plus, I’m always getting messages from people I don’t know whose teenage children were impressed by the videos. I’ve even been congratulated by older people who have seen one of the programmes. It’s really incredible.
Are you conscious of the influence you have and how much you’ve inspired others?
I hope so, because I think there are a lot of people who can identify. A problem, whether physical or psychological, should never be an impediment. Though what I went through as a kid wasn’t as extreme as in other cases, I think it could be classified as bullying, because I did feel pushed aside at times, and I think my story can be of help. It’s like, “wow, this guy made an arm out of LEGO, and he was called names as a kid, laughed at, etc.”. People can identify with this and take inspiration. I also identify with things at times, like when I went to see Wonder, for example, a film about a little boy with facial deformity. I cried for ten minutes after I finished watching it.
Did you ever get angry with them?
Yes, lots of times.
Did you ever get in a fight?
Poland syndrome is a rare congenital disease that owes its name to British surgeon Alfred Poland, the first to perform clinical research on the condition. It is caused by an anomaly that occurs during intrauterine development and is characterised by the underdevelopment of the muscles in the scapular region. The shoulder and pectoral muscle, in lay terms. “While there may be some correlation between this syndrome and the fact my right arm never fully developed, it hasn’t really been studied yet”. What is clear is that it is not simply a matter of hereditary genetics. And David has it and wants to help make life better for those like him or in a similar situation. That is why he has decided to study Bioengineering.
I want to help people with the same problem, regardless of the part of the body that’s affected. I want to make sure they can use the natural movement of the joint to make an articulated artificial arm work. Because a lot of people have contacted me asking if I could build them a LEGO arm, and I’ve had to turn them down. I’ve been contacted by people from the United States, England and even Australia, asking me to build them a prosthetic arm, finger or foot. They live far away, and I don’t have the resources to make a real prosthesis or the knowledge to analyse a photograph and use it to design a 3D model. That’s why, when I finish my studies, I’d like to be able to help people from around the world. That is, to have the knowledge to create a completely functional artificial limb that lasts them their entire life.
How did you get here? How did you hear about UIC Barcelona?
It was actually them who reached out to me, and to be honest I’m incredibly happy and thankful they did. In fact, it was one of the few institutions that contacted me without my dad talking to them first. That was a big deal for me, because it meant they wanted to get to know me, and they offered me an “innovation prize”, which made it possible for me to study the Bachelor’s Degree in Bioengineering here. And that’s really satisfying: for someone to take notice of you for making an arm out of LEGO.
What is your goal now?
My goal? To break the bubble of Andorra and help people outside the country.