As in the film ‘Wonder’! This is how you live in Costa Rica with Treacher Collins syndrome

Alina Soto is 32 years old and, like the protagonist of the film, she suffered from ruthless bullying, inquisitive looks, and ignorance of her condition. However, now she is an empowered woman, married, and fights for her peers to have better living conditions.

From her singular childhood, Alina Soto has wanted to erase everything or almost everything. It is that, no matter how hard she tries, she will never be able to forget the day her classmates began throwing papers at her and calling her “garbage.”

“I went into the classroom, after recess, and I remember that the children had moved all the desks to one side of the classroom, so that mine was left alone, at the other end. I came in surprised, but I still didn’t say anything and sat down,” Alina recalled.

“Then something happened that left a mark on me. The companions agreed to take the garbage can and, each one, took out a piece of garbage, a paper or something, and they threw it at me and said: -the garbage to the garbage can”- added Soto, who is 32 years old and was born with Treacher Collins syndrome.

This syndrome is the same as Auggie Pullman, the main character in the movie Wonder (Extraordinary, 2017). This film -starred by Julia Roberts, Owen Wilson, and Jacob Tremblay-, was among the most watched on Netflix this Costa Rica in August.

The film tells of Auggie’s (Tremblay) struggle to fit in at school, to which her distraught parents have decided to send her for the first time. In the corridors the other children do not stop looking at him, they push him away and cruelly bully him by looking at his face, which is very different from the others.

Auggie is scared. From time to time she uses a helmet to hide her face, she feels that she is a strange being and she asks through tears: -Why me? Why did I have to be born like this? Alina also once wondered that. She looked at others and felt different. Alone.

Treacher Collins Syndrome is a genetic disorder characterized by severe craniofacial malformations. It has no cure, but in no way affects the intellect of those who suffer from it, as many mistakenly think. Unlike Down syndrome, people with Treacher Collins tend to have a life expectancy similar to the population average.

According to statistics, around the world, 2 out of every 100,000 births have this condition. In Costa Rica, as reported by the National Treacher Collins Syndrome Association, there would be about 13 people with it.

“In fact, as a child, I thought that only I had the syndrome in Costa Rica. People with this syndrome hardly know each other. It was until I began to lead the Foundation that I began to realize that there were others like me and well, I have already established a relationship with some,” Alina commented with a tone of satisfaction.

But for this article, Alina’s friends gave up participating. They prefer anonymity, not exposing themselves too much to the cameras and avoiding as much as possible the scrutiny – often ungrateful – of social networks.

Alina is the exception, but not precisely because she likes fame. She simply wants the world to become aware that they are not “mentally retarded”, that the specialized treatments they require can be carried out safely in Costa Rica, and, finally, that their peers give their shoulders, become a community, and do not feel alone.

Alina has a mission

Alina does not describe her arrival in this world as traumatic. Perhaps the best way to describe the moment would be surprising and somewhat disconcerting. Before she was born, no one knew that

Alina featured Treacher Collins. In fact, after delivery, well, either.

“I was born and nobody understood or knew what I had. At birth it was a surprise for my parents since they saw me with a super different face, I did not seem to anyone in the family and above all, no doctor knew how to explain why I saw myself that way, “she revealed.

“They put me in an incubator because I was not breathing well, something that is very common in people who have Treacher Collins,” added Alina, who has great speaking skills, good humor, and a lot of confidence when presenting her ideas.

Alina ran into luck. Within a few days, she was able to breathe on her own, although she notes that many children with the same condition require a tracheostomy tube to lead normal lives. The fact is that, since no one knew what to do at the hospital, Alina’s parents did not remain with their arms crossed. An important discovery, made by her mother, would change everything.

“My mother, before I was born, worked as a public relations officer at the Children’s Hospital. That helped him to have access to a medical library that is between San Juan de Dios and the Children’s Hospital, where she dedicated herself to searching genetics books for something that would give an idea of what I had, “said Alina.

“She searched until she found a photo of a boy who looked like me. Although no doctor could confirm it, she was sure that it was Treacher Collins. That’s when she decided to take me home, even though the hospital told her that she did it at her own risk.”

Once at home, her mother did everything she could so that Alina received all the care she needed, whether it was at home or in hospitals. For example, when she was a few years old, Alina was treated because her ear cavity and her ears were smaller than normal, so she did not hear well. They had to fit a hearing aid to correct the problem.

Alina also received orthodontics and was treated at the ophthalmologist, as she was born with “wide eyes”, as she describes it. This condition generated some problems in her eyesight. “Some others are born with a high palate and need speech therapy,” she said.

At age 8 she had a pretty big surgery. At the Children’s Hospital, she was treated by a maxillofacial surgeon who suggested removing a bone from the upper part of the skull to graft it in the area of the “cheeks.”

“After removing the bone from the top of the head, you had to open the skin above the gum to insert the bone grafts. We are born without cheeks and, as there is not enough bone at this level, there is no support for the orbicularis oculi muscle and the upper jaw “, explained Alina.

Then Alina was lucky again. Other patients with the same syndrome have been operated on more than 20 times to correct certain deformities, she has not. In the movie Wonder, for example, it is said that Auggie had been operated on 27 times and was only 10 years old.

“It must be made clear that this is not a disease that we suffer or that the condition is going to degenerate. Just as we were born we stay. Our condition only affects that, for example, we cannot go to the dentist like any other person, since we cannot remain in certain positions. That is to say, that the medical attention is complicated a little “, commented.

With the support of her family – who always treated her normally – Alina was able to handle the appointments, with the delicate surgery and also with a physical difference that, as she grew up, became more evident to her. She did not look like her brothers, or her cousins, or anyone else.

With all that Alina could. However, how was she going to do when she entered school? What were her classmates going to tell her? Would they accept her like any other girl? Auggie’s same fears were Alina’s. The movie, for her, was like a kind of mirror.

Ungrateful reality

But school, sadly, was not much different. Her condition was compounded by mockery and the typical crisis of adolescence. “It was difficult because I saw that other students were sending greetings and inviting them out. Not me. That distressed me a lot because I said: -no one is going to notice me. What’s going to happen to me- “she recalled.

“They excluded me. They took a walk somewhere and I was not invited. They agreed to do homework and I was always the last option they chose. When they chose me, it was because they knew that I was smarter and then they chose me as a wild card to save them, rather than wanting to be with me, “she added.

In some social activities, to which she was miraculously invited, the discouragement returned. Alina loves to dance and nobody took her out. She also did not find great support from teachers. Alina says that some of them encouraged her to achieve her goals and that she had nice talks with the eleventh-year director about her future.

“But the reality is that none of them marked me. The truth is that many preferred to ignore the issue or ignore me, as long as they did not deal with this. I think that many people didn’t like me, because in class I always raised my hand and participated because I knew the answers,” she recalled.

In those times her only refuge was her family, who never treated her differently. For Alina, that was her support. “My mom used to tell me: -see, what you have can be improved with surgery-. Or she would say to me: -this is merely visual; see that there are people who do have more severe things, which affect their intellect-. That formula didn’t always work, because no matter how much you reason, you don’t want that to happen”.

But, bullying and discrimination reached university classrooms. Alina was accepted into the History major at the University of Costa Rica, and it all started again. Alina innocently thought that when she entered the higher education system the teasing would stop, but the reality is that they were simply transformed.

“I thought: -what success, where people come to what they come, they come to study and nobody cares what one looks like-. But then I realized that no because here too, students made jokes about me and according to them I did not realize that they were wavering me,” she lamented.

But the most outrageous thing was when she was discriminated against in a course that she enrolled and that took a long time to enter. The board in charge of the course summoned Alina to tell her that, at the end of the study program, they were going to give her only a differentiated degree, because she could not dedicate herself to what she was studying

“I don’t know what happened to them. I do not know where they got the idea that, since I saw myself like that, I was not up to what was needed. They sure thought I had a cognitive disability or I don’t know, “she commented indignantly.

Alina preferred not to reveal the course from which she was rejected. However, she did mention that whoever graduates from that study program could be exposed to mass audiences, and even appear on television.

That is why, ruthlessly, in that meeting, they told her that she simply was not capable, that her face was not pleasant, and that she was not going to be able to appear on TV. She had no choice but to withdraw, completely disappointed. “I was 18 years old, I was very young and I didn’t know how to deal with it. If that happened today it would be different, it would not allow what happened to happen “, she concluded.

Empowered woman

Although the above stories sound painful, Alina never talks about her past life to make them feel sorry for her or have any consideration for her. Currently, she is in charge of her life as anyone else and does not intend, under any circumstances, to be treated differently.

Today Alina studies Special Education and works as a Lesco interpreter for the Technological Institute of Costa Rica, the National University, the Costa Rican Social Security Fund, and some private institutions. She is a very recognized figure in the deaf community of the country.

As if that were not enough, her fears of not finding someone who loved her did not come true. Alina has been married twice already. “Unfortunately the first person I married was not prepared to take on the commitments of marriage, so I got divorced and it was very painful,” Alina confessed.

“It is that also before I thought that if someone was going to love me it was almost a miracle. I almost had to be grateful. And that wrong idea had a lot to do with my not marrying the right person. In that marriage I went through situations that, if I was as empowered as I am now, I would not have allowed them to happen, “she added.

But a year and a half ago Alina got married to Daniel Montoya and, in her smile; you can see how in love she is. “The time I ended up falling in love with Daniel, it was the day I told him that if we were to have children there was a 60% chance that they would have Treacher Collins. I will never forget his answer. He was driving, he turned around and said: -so what? “, She narrated excitedly.

Daniel, for his part, remembers Alina’s comment well and also her determined response. “I said that to Alina because if one of us were to be born with Treacher Collins, I would never love him less. Rather, I’m going to love even more, “said Daniel, who is an English teacher.

Many often wonder if Daniel has some kind of disability and the answer is no. In a white dress, no matter what they say, Daniel led her to the altar. “I am a happily married man. I fell in love with Alina who is extremely kind, given to others, and super hard in everything. I always felt a great connection with her, a connection that I never felt with anyone”, expressed Daniel, without hesitating a second.

“When I decided to marry Alina, my family was surprised, but they have always supported me. Some other close people made comments, but they were not important people. They are people who do not see beyond the physical, “he added.

Alina is happy with her life. Regarding her physical appearance, she has no complexes and she faces all the challenges that come her way. On the bus, they continue to look at her strangely and the children continue to observe her with curiosity, but that does not determine her. Perhaps she gets a little more upset when the glances come from adults, but at the same time, she understands that everything is part of the general ignorance of her condition.

“They stare at me trying to figure out what I have. They deduce that I have mental retardation and say: “Oh poor thing that little girl, or poor little girl.” I don’t like that, because they wouldn’t even let me talk and they are already drawing conclusions, “Alina lamented.”Then they hear me speak and they stare at me as if to say: -look, she can speak, she can write and read-. It’s uncomfortable,” she added.

But nothing brings Alina down. Every day she becomes a stronger woman. About 3 years ago she traveled with her mother to Spain and in that European country; she was able to contact the Treacher Collins Association of that country. It was a fascinating experience for her, in which she claims to have found the missing piece to the puzzle.

Face to face

When Alina was 27 and finally met other people with Treacher Collins, what impressed her most was how much they were physically alike. “I was very shocked. We have a very similar physiognomy and many may even think that we are family, “she said with a laugh.

But the physical thing was not the most important fact. For her, meeting her peers changed her life completely. She was able to answer questions that were never answered and carry on a conversation without giving explanations about what she felt inside.

She was even able to understand why she cried differently from others and the reason why she always dreaded sleeping alone. “Yes, we cry differently. Our tears come out as inside the face, it is not usual. As we have our eyes like little drops, the tears like they run, it’s different “, revealed Alina.

“Sleeping alone also had an explanation. Many of us have sleep apnea, which is a condition in which depending on the position in which one sleeps, breathing is interrupted. So of course, my survival instinct told me that I couldn’t sleep alone. If one day I began to suffocate, I was going to need someone to help me,” she added.

In short, by meeting her peers, Alina ended up empowering herself. She also understood that she could be a loved woman, that she could have children and fulfills herself completely in life. For this reason, upon returning to Costa Rica, Alina knew that she had to look for people of the same condition. It couldn’t be that she was the only Costa Rican with Treacher Collins and she wouldn’t rest until she found them.

Of course, it was not an easy task. To find them, nobody could or wanted to give him clues. What happened was that, when opening a Facebook profile with the name Asociación Nacional Síndrome Treacher Collins Costa Rica and publishing some posts on the subject, the cases began to appear.

“In the end, I was able to locate about 9, of which I only personally know two. The rest I know from text messages and others from video calls. One is a baby, “Alina commented. Of these cases, she highlights two, as they give her the strength to continue fighting to improve her living conditions. One did not even finish school and, the possible reason for dropping out is that no one understood that her cognitive abilities were never less and that she could get ahead like others.

“The other case is more serious. Some doctor operated on her badly, to the point that she cannot open her mouth, cannot speak well, or feed herself properly, “Alina lamented. That is precisely one of Alina Soto’s main missions; promote knowledge of the syndrome so that, in the country, more doctors can specialize in the subject. The objective is clear and urgent: that people with this condition can meet their health needs with full safety.

For her and everyone, Alina will never give up. As she waits for her association to grow and Treacher Collins people to shake hands, she will continue to smile like Auggie at the end of the movie: self-assured, unashamed, and ready to take on the world.

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