A “rare” disease affects his muscles and he learned to overcome his limits: he swam 8 km and now he wants to cross the Río de la Plata

Every day, Matias Torres returns from working in the nursery that his parents opened for him and while greeting his mother he repeats: “I am happy.” When Adelina Rivas gave birth to him, on May 27, 1987, he did not force himself to be born: he was hypotonic and did not suck.

“It was a baby that did not move. We put him in the crib and he was in the same position for hours. His first days were spent in boarding school, but nobody told us what he had. We only knew that he did not force himself to be born, that is why we took him to early stimulation and that is how he grew” sums up his mother.

The family could not stop thinking about what Matías had and found out after a blow.

“At 6 years old, he played hide and seek with the brothers at home, fell and broke his leg. We took him to the zonal hospital and since they could not attend to the emergency we went to Garrahan where a clinical doctor saw him because the traumatologists were operating. We waited with the baby on the stretcher and that doctor said, I remember it verbatim: ‘This boy is Prader Willi.’ I replied: ‘No, it’s Matías Torres!’ because I did not understand what he was saying. And she explained to me that she took care of boys with this condition, that I should not worry and that we talk about it with their doctors, without saying more … And then the search began. I took him to a neurologist and asked her what that was about. He told me that from the features of his little face he believed that the Garrahan’s doctor was correct and we began to find out what it was about. They did a genetic study and gave us the results a few months later”.

That boy, in 2018, swam across an arm of the Paraná River at the height of San Nicolás, the Yaguarón. In those 8 kilometers, at a pure stroke, he shouted to the world that he would live life in his own way.

His feat was recorded by director Alejandro Caamaño in the documentary Against the tide. But Matías prepared for that moment almost all his life. Only he and a handful of people believed it possible. Is that the syndrome that was diagnosed at age 6 is a rare genetic disorder, which causes decreased muscle strength.

Not only was it unlikely that he could swim those miles, it was directly unthinkable that he could swim.

Matías’s relationship with water began at the age of 3, as therapy. In this environment he began to develop the strength of his legs. And he took off for a swim.

At 15 he began to participate in a group that swims in open water: he crossed the Monte lagoon, swam in Areco and finally completed the crossing of the Yaguarón. Now he’s going for more.

“He really likes doing it. He does not compete against others, but sets his own goals. He seeks to surpass himself, no one else, and that is the important thing. Now he wants to cross the Río de la Plata,” said Adelina Rivas, her mother, who still cannot believe the desire to improve himself that the youngest of her children has.

Alejandro Camano, the audiovisual producer who immortalized the crossing of the Yaguarón, recalls that that November 24 was “a day that there were disturbances in a match between River and Boca. This is how I tell it in Against the tide. Matías’s challenge in the Yaguarón, because I wanted to make that parallel so that it is known that while the world had its eyes set on that match, there were other people having their own endings”.

“When I saw what he was doing, I realized that neither I nor anyone else who was accompanying him could swim that distance. In his disability, he could do something that others could not, even without any physical disability. These kinds of contradictions caught my attention,” he admits.

The documentary was released in March of this year. The idea was to present it in a cinema and for it to be part of a festival that focused on inclusion, but due to the pandemic it was broadcast for the first time virtually – it can still be seen on Youtube– and since it saw the light it received not only good reviews but it is fulfilling its objective.

“I received many messages from people who have a family member with a disability, saying that seeing him served as motivation and inspiration. People often believe that someone with a disability cannot do certain things. And in that case, Matías shows that despite having Prader Willi, he can do many things and that a diagnosis is not conclusive”.

Camano highlights that his story also reflects “the love of a family with their disabled son, but it also goes further. Because in this story there is a vehicle that is well learned and well taught sport, which increases self-esteem and the ability of a person to compete with himself. Sport is the tool he has and he knows how to use it”, he concludes.

Although he leaves everything in the water, that is not the only activity that the 33-year-old does. Eager to work, his parents opened the “Matías Nursery” in Temperley, a place from where he also raises awareness about the syndrome he has.

There, at 1539 Prospero Allemandri Street, in the town of Temperley, it is open from Tuesday to Saturday from 9 a.m. to 6 p.m.

Before the pandemic, Matías went to a Day Center in Lanús where he learned the textile trade. There they made bags and banners that they later sold, others chose to work with wood. From those sales they earned a few pesos that financially incentivizes them.

“Now, he told us that he wants to leave it to dedicate himself to working in the nursery. When he told us that he wanted to be independent, my husband came up with this business, because Matías also likes plants. He knows perfectly what he has and that he is a person with a disability, we never hid anything from him, we always told him that he should take care of himself, because this syndrome generates an intense desire to eat and he should not gain weight. But he knows it and takes care of himself. He is proud of everything he does, he loves to live, he wants to live for many years”, Adelina concludes.

Excited, Adelina reflects: “A family must understand that children with disabilities have our same rights. As a family, we have worked for Matías’s independence for many years, so we decided to put a nursery in the house that belonged to my parents. He works there every day and that is good for him”.