The ultrasounds didn't anticipate anything. Soledad was already the mother of Sofía and Aixa, and now she was expecting her third child, a boy. It was, she says, "a totally normal pregnancy." At least until the sixth month of gestation, when she noticed that her belly was growing a lot, very fast. "The doctors did new studies and everything was fine, there was nothing strange," she says.

When the eighth month of gestation was beginning, Soledad decompensated, labor began, contractions started and her son was born. “He was eight months old and weighed four kilos three hundred grams, he didn't fit in the incubator in which he needed to be to accompany his respiratory development”, describes Soledad Ruppel from Río Colorado, the city in Río Negro where she has lived for more than fifteen years.

Yamir was born 21 years ago and his mother knew immediately that something was completely different from how the birth of her two older daughters had been. "My baby had eyes on the side of his face, it was huge. His arms and legs were enormous, the nurses had to leave the incubator lid open because he wouldn't fit," recalls Soledad.

The exact diagnosis to know what Yamir's condition was took two years and many trips from Puán, where the family lived at the time, to Bahía Blanca, where they examined him exhaustively. Meanwhile, Yamir grew: “The first year, he grew about six centimeters per month, it was impressive”, reconstructs his mom.

We recommend reading: Yamir was born with Weaver syndrome, an extremely rare genetic condition characterized by advanced bone maturation and anomalies in the skull, skeleton, and neurological system. It statistically affects one in every 15,000 people: one of them is Yamir, whose bone overgrowth means that, for more than a year, he cannot walk. Nor does he speak, except for the only three words he uses: "yes", "no", and "ana", a kind of wildcard that he uses for almost everything. During his first year of life, Yamir grew about six centimeters per month. “He understands and makes himself perfectly understood, but he cannot speak. That has to do with how his brain was formed. The motor part and the speech part were especially affected by the syndrome,” describes Soledad, and adds: “As for growth, every year he has ‘growth spurts’ much larger than a common boy. His bones grow a lot and not so much his muscles and tendons, that's why it impacts his mobility. Sometimes it happened that after the growth spurt he spent one or two weeks in bed and then he walked again, but with the growth spurt of last year he could no longer walk”. According to his family's estimate, Yamir is two meters and thirty centimeters tall. "We measure him in bits and pieces, because right now it's impossible to stop him. He has great pains and his body becomes very rigid because neither the tendons nor the muscles can keep up with what's happening with his bones. Sometimes you have to wait several hours for his body to loosen up a bit and be able to move him," describes his mother. In order to get him out of bed and move him, what the Ruppels really need is a crane of the kind used in hospitals and rehabilitation facilities.

The End of School and Unexpected Help

As with many boys and girls with a health condition that impacts their physical or cognitive development, Yamir was schooled in a special education school and, once he finished that process, at the age of 18, he was left without any containment space to attend daily. “Through school, Yamir had therapeutic support, kinesiology, different workshops, psychomotricity. All therapies he needs to be well. But when he finished school, he no longer had any of that and that implies a lot of deterioration for Yamir,” describes Soledad, who cooks different foods in her house to sell and obtain some money that way. To that she adds the disability pension she receives for Yamir, which barely exceeds 400,000 pesos. Weaver syndrome also impacts motor skills and speech. It's been a year since Yamir has been able to walk, and there are days when the rigidity of his body leaves him completely immobile. A few weeks ago, Sofía, Soledad's eldest daughter, went to visit her family and recorded a video about what her brother's daily life is like, who is exclusively cared for by his mother and who also lives with Emma, a seven-year-old sister with whom he shares games when he feels well. "At first, not much happened, but then the video went viral and a beautiful wave of help began," says Soledad. They received an orthopedic bed, although it's small for Yamir: students from a technical school in Río Colorado are working on an adaptation so that the young man's body fits well in that bed so necessary for his body. They also received diapers and the promise of two possible postural wheelchairs that could help Yamir, who due to his size cannot be in a regular chair. "At the hospital they told me they would bring us the crane to move my son, we still haven't received it. That would be great so that he can move around even on the days of more pain and stiffness," says Soledad. The most spontaneous help came from neighbors in Río Colorado: "Shoe and clothing manufacturers came and took my son's measurements. We have already received several pairs of long pants and t-shirts that are very useful because I had him in shorts, which I made with the long ones after the last growth spurt, and now the cold is coming. They are also going to make him slippers to wear at home and a pair of urban sneakers. All the help that different neighbors are giving us is very moving, they were moved by my son's story," describes Soledad. Among other donations, the neighbors took care of heating the house. Yamir with Emma, his little sister, with whom he lives. When he feels well, they can share games. A therapeutic companion approached the family and will provide Yamir with some hours of follow-up, and a lot of help also arrived through money donations. "It is essential that we can enlarge my son's room so that a bed in which he can fit can enter, and the crane to lift him. Now he is in a place that is too small for him, and we also need a bathroom that meets the adaptations he needs," says Soledad. Those are the big goals they set as a family, and that they will be able to achieve to the extent that they receive more donations and the local hospital in Río Colorado can provide the crane needed to move Yamir. "Also, a girl from the Municipality of Viedma was the one who brought me the diapers and said she was going to try to get us a therapeutic companion," describes Soledad. “I can't believe how they are helping us. The video of my son went viral and the truth is that all the help that those who know his story are giving us is moving. I have nothing but words of gratitude. It is very difficult to see him in pain on the days he can't even move in bed, and I am alone with him and with my little daughter. That's why seeing all the help that arrives is very exciting, because he is going to be able to be better,” says Soledad, who didn't know everything that was coming when that baby was born who didn't fit in the incubator but who took care of him in every step of his life.