Martí Álvarez: "My doctors' eyes light up when I tell them what I do."

BarcelonaThe life of Martí Álvarez (Barcelona, ​​2002) changed when he was three years old and diagnosed with a rare disease called Guillain-Barré, which left significant after-effects on his legs and back. He also suffered from severe scoliosis and kyphosis as a result. Doctors even doubted whether he would be able to walk during his long stays at the Sant Joan de Déu Hospital. Years later, Martí has ​​studied international business, works at a consulting firm and is tackling the Titan Desert for the second time, the demanding cycling race in the Sahara Desert that already ended in 2024. Now he's back with the aim of raising money to help the Hospital where he was treated so well.

— I always said that one day I would repay the people at the Hospital for everything they've done for me.

Many people have good intentions, but then forget. Not you. You want to close the circle by helping those who helped you.

— I owe them a lot. I was admitted to Sant Joan de Déu when I was three years old and have had to return regularly for 20 years. I've spent many nights, many days in rehabilitation, and several operations, and, well, they've always taken very good care of me. The fact that I can do these things today is thanks to them, right? And since I was little, I've always thought that, wow, when I grow up I'll do something, some donation, as a thank you for everything they've done for me.

And you do it by playing sports.

— That's right. A few years ago, I started taking sports a little more seriously and began to think about combining the two by doing a charity event for San Juan de Dios. And it's something I hadn't dared to do until now, perhaps because of issues I didn't dare to expose myself to. It's not that I'm shy; I've never hidden what I've suffered, but it's one thing to tell friends about it and another to do interviews. Last year, I went to the Titan Desert, and that allowed me to explain my experience, since the organizers learned about my experience and wanted to include me in the documentary they were making about the race. Titan is very tough, but the best thing about it is its people. They always take care of charitable causes and help people make their dreams come true. So now it's time to return for charity. There's nothing to lose; it's something I'm really excited about.

Why is this disease unknown to most people?

— Yes, it's a neurological disorder called Guillain-Barré, in which the immune system attacks itself for no apparent reason; there's no specific cause. In my case, I was sick for many days at a time when I was three years old and didn't recover. And when it seemed like I was all over, one day I couldn't stand. My parents freaked out and rushed me to the hospital. After many tests and several nights in the hospital, they eventually diagnosed me with this disease, which primarily affects the nervous system and the extremities. In my case, I was immobile for two or three months. I couldn't walk or move my arms. In 90% of cases, mobility is eventually regained in the following months through rehabilitation, but I was unlucky. I was one of the few cases in which mobility wasn't fully recovered. It affected a very small muscle in my legs, which is what allows you to raise the ball of your foot, for example. And two years later, somewhat as a result of this, I also suffered from scoliosis and kyphosis in my back, which meant more surgeries. Some doctors who'd treated me throughout my life didn't believe it was this condition, saying it was impossible for me to have such severe after-effects.

It must have been hard for the whole family when you couldn't walk.

— It was once. I lost all mobility. I had to be pushed around in strollers everywhere for three or four years because I couldn't walk. I had to go to San Juan de Dios for rehabilitation every day to regain some mobility in my legs, but I was left with significant after-effects.

You know the reality of our healthcare system well...

— San Juan de Dios is a children's hospital that has become a world leader. Not only for the services it offers, but also for the people behind it. It's full of volunteers who care for you while you're in the hospital, putting on shows to make you laugh, playing games... it's a special center. I think we're very lucky to have this healthcare system. Everything can be improved, and I understand the frustration when our emergency rooms are overcrowded, but we're very lucky to have the hospitals we have.

Sport has helped you a lot.

— We've always played sports at home. He became a professional handball player and later fell in love with cycling and triathlons. My parents encouraged me to play sports; they took it seriously. They knew that practicing all kinds of sports could be key to my recovery. Since I was 5, they also took me to recovery every day so I could regain mobility. They've helped me and encouraged me to run, swim, ski, hike... The philosophy my parents taught me is that I shouldn't limit myself. I can't think about what I can't do; on the contrary, I should think about how I can do it.

And how did the idea of going to the Titan Desert come about?

— Titan was a dream my father had for many years; he always said we'd go with my brother, the three of us, to do it. But due to a heart condition, he couldn't. So my brother Jan and I did it. We've always followed the race, we always talked about it, the idea was always there. Last year, we took the plunge. We saved up, trained, and took the big step. And the truth is, it was worth it, even though it's harder than I thought. Doing 100 km through the desert every day... it got to the point where I couldn't understand how my body could get up every day, do 100 more kilometers, and go back. From the second day on, you're wrecked, you don't rest well, because you have a tent with a bed on the floor, which is no luxury. You eat as best you can and you have to avoid stomach problems... in my case, I can pedal well, but I have some underdeveloped muscles, which makes mine move more. And then my back also suffers a lot. Having my brother by my side was key.

When you talk about your family your eyes shine.

— Yes, yes, absolutely. In fact, my parents came over the last few days to cheer me on. They've never failed me. In this regard, I feel very fortunate. Despite everything I've had to endure since I was little, I've been very lucky in my family. And with good friends, I'm incredibly grateful for all the people who have surrounded me throughout my life.

Now you're back with that charitable purpose. What does it entail?

— This is the Impulso Solidario project, an initiative that aims to raise funds for the detection and research of rare diseases like mine. San Juan de Dios has the Únicas project, focused on rare diseases, and what we want, above all, is to publicize this project. Spread the word to help raise money on the San Juan de Dios website or the same Impulso websiteDeep down, we'd be grateful for any kind of publicity. By creating Titan, we want to be a platform, but we want to do so by staying active once we return from the race, with the goal of helping children who are suffering and who have suffered from a rare disease like mine.

What do the doctors who have been with you your entire life tell you?

— They tell me I'm crazy. They're always impressed and excited to see me on a bike. Their eyes light up when I tell them. They saw me when I was five. And now they see that I can do these things... I think it excites and makes them proud.