He suffers from juvenile hyaline fibromatosis, a disease of which there are only 65 cases in the world.
At the age of 23 he has just published his first book, “Formas Propias”, a frontal chronicle about himself.
And already write the second
Marina Dragonetti
05/06/2021 6:01 AM
Clarín.com
stories
Updated 05/06/2021 6:01 AM
-
Genta, can you take me to the mirror?
Matías Fernández Burzaco was 20 years old when for the first time he was left alone in front of his reflected image
. He wanted to look at himself in full. In the house in the Flores neighborhood that he shares with his mother and older brother, his room has enough space for a bed, a giant TV to play the playstation, a wheelchair that looks galactic, two reclining armchairs, a machine oxygen, a library full of books and another full of dressings, gauze and hospital devices. But there are no mirrors. Before that day he hadn't needed them either; the only two situations he paid attention to were combing their hair before going out or when one of his friends wanted to take a selfie. He was ashamed to ask to be left alone, it might seem ridiculous. His friend from elementary school, Lucas Gentile, parked the wheelchair in the dance room where his mother taught and left him alone for a while.Matías's hands perspired. It seemed that all those years it had been inhabited by a strange presence.
Matías is observed, discovered. Outline the traces of an intimate X-ray.
And he writes: "I am weird, I am deformed"
. It refers to the disease that literally took his life by storm. Juvenile hyaline fibromatosis is a chronic pathology that does not stop and does not cure either. There are only 65 cases identified in the world, two in Argentina. It is as rare as it is invisible to most. For those who suffer from it, however, it is impossible not to see it. Matías's body is fragile; he wears black child-size sneakers, his hair is the color of a unicorn, his legs and arms contract in limited movements, his mouth always remains ajar, and when he laughs he emits a sharp sigh. Since he can remember, he has been subjected to medical reports, operations and the constant care of others. Matías is a journalist and writer. Three years ago he began to tell his story, which took shape in his first book, "Formas Propias: Diary of a body at war",a record as lacerating as it is magnetic. It portrays a personal truth; the beautiful, the bad and the horrible of being in their shoes.
"I desperately wanted to know everything about my illness"
Gabriela Demonte's eyes always outline a half smile.
Nothing seems to disturb that perennial joy that characterizes it.
When she talks about her son's disease, she does so with didactic tenderness: “Hyaline fibromatosis is a very rare genetic disease in the world.
It is autosomal recessive, which means that the pathology is in the genetic histories of Mati's father and mine.
It is a needle in a haystack ”.
Two years after having her twins, Juani and Agustín - now 26 years old - Gabriela became pregnant again. On January 30, 1998, Matías was born by natural childbirth and with little more than 4 kilos in the La Esperanza Clinic. “He was small, beautiful. He did everything a baby does, but a month later he had bronchiolitis and spent several weeks doing kinesio and very still. I realized that something was not right when I sat him down, did you see when you put the babies on his legs? At one point he began to draw his knees and it hurt when he dressed him, he cried. The pediatrician thought that he had had a delay in physical mobility due to a neurological sequela and that it was going to be resolved ”. Gabriela is a dancer and choreographer. For her, the body is much more than movement. Gracefully skirt the abyss of
a conversation that can open a sore from one moment to the next
;
that story that he told Matías and that he repeated a thousand times still brings a bitter taste to him.
"When you have a small child you are always on the alert, when you have a child with a disability that does not end anymore."
The first symptoms appeared averaging the eighth month;
Matías's neck was a little shorter, his wrists a bit wider, some pink spots on his nose and ears were surprising.
A journey of medical consultations and the bewilderment of the specialists took place before Matías turned one year old.
When he was nine months old, his mother took him to an orthopedist to see his knees.
“He told me: '
there is something else here'
”.
Gabriela left the office crying.
With Juan - Matías' father - they went to the Garrahan Hospital, where they did all kinds of studies without finding a result: it was not an autoimmune disease, nor was it neurological or muscular.
The Fernández Burzacos were about to despair when Margarita Larralde de Luna, a Garrahan dermatologist, suggested, due to the rarity of the picture, that they do an electron microscopy.
"And there he gave."
.
Since he can remember, he has been subjected to medical reports, operations and the constant care of others.
Matías is a journalist and writer.
Three years ago he began to tell his story.
.
The fibromatosis that affects Matías is an alteration of the genetic code. The body does not generate the proteins necessary for the development of muscles, tissues and soft tissues; instead, it makes more collagen than normal by producing a foreign substance that is deposited in the connective tissue of the skin, joints, and bones.
This hyaline substance hardens and replaces the muscles.
Its accumulation generates tumors that invade the body inside and out.
Everything is deformed.
Every muscle, tissue, and tendon atrophies.
The joints contract.
The thorax is like a rigid box.
It's hard to breathe.
It costs to eat.
It's hard to walk.
The brain works.
“Many people confuse independence with autonomy.
The second is that the patient decides what he wants to do and independence is that he can do it.
Independence in these patients is blocked, that is why they are dependent on a person who executes what autonomy orders them to do ”, explains Fernanda Decastro Pérez-former head of the Garrahan Day Hospital and Matías's pediatrician until he was 18 years old.
Matías Fernández Burzaco with Cristian (in a white shirt) and Ivan, two of his friends since elementary school.
Photo Juano Tesone.
"There are questions that are answered and others are not"
Matías's skin is a dizzying highway full of curves and accidents. His ear looks like a mollusk, the bulge on his head is the largest and weighs a lot. "My body is flasher, I know it is not generic but I would not change it." He recently counted the number of tumors he has in his body and reached 172. “Subcutaneous I know there are more. The one in my nose causes me sleep apnea ”. Matías wears a bipap that helps him breathe while he sleeps. When you don't need it, it means you had a good night. As a patient, all his life he underwent treatment,
as a
journalist he began to interrogate his illness when he turned 20.
The memory illuminates on March 8, 2018. That afternoon his brother Agustín loaded him with contraband in his car for an interview. The sky seemed clear. Nobody could find out about this expedition to the Garrahan Hospital; Matías wanted to see his former pediatrician, who had cared for him since he was 4 years old. "The parents approached me because I was treating a patient with the same pathology, and they understood that I had expertise in this." That Thursday, it was the first time that Matías visited her without his parents. As a patient, she describes him as "a docile child." At each emergency visit, Mom and Dad would talk to each other outside. Matías did not participate in the conversations. So I had many questions about her medical history.
“At times I didn't know if my doctor was pretty cool or the stupidest in the universe. I was very afraid to ask him very specific questions and to know that some he could not answer in the best way; in fact, he told me that the gene for my disease is not 100% confirmed because the molecular check-up that fully confirms it was not done ”. When Matías's case was referred to him,
there was only one other patient with juvenile hyaline fibromatosis
. “As they presented similar symptoms, we thought they had the same and we faced their follow-up the same as we had done with the previous patient. We did not have much more experience, neither from the dermatological nor from the clinical point of view, ”recalls Fernanda.
Matías was diagnosed when he was one year old. The molecular study is the one that offers total certainty about the pathology. Instead, electron microscopy - an imaging study to visualize clusters of tumors in detail - allowed doctors to get closer to the clinical picture. For Gabriela "it was very hard because they told us that the condition has two forms or phases: if it becomes systemic it takes over the whole body." The disease affects vital organs and is fatal in the early years.
"We spent his early childhood hoping he wouldn't turn out to be fatal
.
"
The doctors did not know much, "they told us that he could have muscle retractions, but no more, and when we started looking ... it was better not to look."
There are 65 cases of juvenile hyaline fibromatosis in the world; two in Argentina, Matías and Mayra Ordoñez. In 2018 he wrote to her on Facebook and she sent him happy emojis. "Even if it doesn't make sense, I love you," Matías replied.
In this overwhelming search Gabriela wanted to find others like her son, she needed to anticipate their possibilities. He contacted a boy from France and a lady in Spain. In Argentina he met Mayra Ordoñez, who lived with her family in Monte Grande, and invited her to his home to meet her.
Mayra is four years older and the signs of her body were different
; his skin was not so damaged, he could close his mouth and he never needed a breathing apparatus. Like Matías, his torso was small, his joints were difficult to extend, and a lot of nodules had sprouted on his hands. A truth became clear, the forms of this disease are unpredictable.
Matías's body had begun to mutate since he was eight months old; Due to its gingival hypertrophy, the flesh of the gums swelled, the chin grew. The nodules began to appear on the chest, nose and ears, also under the skin. At age two, she had her first major operation to remove a breast lump and stretch her legs. "We went to the pool every day to do kinesio, I used orthopedic casts with traction pulleys to keep my leg straight," says Gabriela. The leg did not give way and the orthopedist advised that she use a walker. Matías couldn't use his arms, and in time the best solution would be a wheelchair. The operations on the nodules did not work; In addition to the infections and poor healing, they reappeared.At age 10, his rib cage was taken out and he began to saturate oxygen far below normal. The doctors wanted to do a tracheostomy but his parents refused; his son could speak and sing. He needed a breathing mask and nightly assistance from nurses.
The skin continued to ooze that strange matter. Lesions and bedsores multiplied everywhere. Every time a bacterium got inside him and his skin turned red, swollen and hot, the Fernández Burzacos rushed to the hospital. Infectious cellulitis required hospitalizations of several days, the antibiotics left him in a fog of confusion.
The nodules advanced like a guerrilla over rugged terrain.
So much so that when he was 16 years old, an athenaeum of plastic surgeons was summoned to evaluate a comprehensive operation and reconstructive hand surgery.
Going through the operating room required total and prolonged anesthesia.
Matías's respiratory capacity could put him at risk, "at the time, he was a minor and we said no."
The ghost of the peremptory always hovers.
Gabriela recounts the episode in detail, her son listens to her in silence.
-And you more, what nodule would you remove?
-I don't know son, the one you want.
Matías in the privacy of his bedroom, at his home in Flores.Photo Juano Tesone
"Writing helped me accept my body"
Matías feels restless inside a still body. When he goes out into the street and the sky is wide open, he is dizzy. I would like to support your legs. When there is no one around, he enters a limbo that does not have time. He hates the loneliness of waiting, the vulnerability of caring. Meanwhile, watch and think.
Words are your movement.
A few years ago he got into the world of rap and freestyle with his brother Agustín. "Who is that boy?" is your first topic; neither monster nor pibito, their rhymes have flow. He searches the world from below and laughs at the other's gaze. He writes at night and he does it fast. He uses a mouse connected to the on-screen keyboard because he likes to feel each letter. His prose flows wild, lucid and poetic. As if every phrase had been latent from the beginning.
When he was a boy, Matías wanted to be a soccer player. He was not interested in journalism, much less writing. After Gabriela got tired of insisting, at 19 she signed up for Eter to study sports journalism. More than an incentive, it was an excuse for him to finish high school. Matías liked to write stories about athletes with a different approach; the basketball player who had started driving a tractor, the blind soccer player who identified feminine beauty by voice and smell. Every time he had an interview, he would drag his companion and a court of friends who held the tape recorder to help him. Messi fanatic, he watched every game of any team of any sport.
Josefina Licitra was a partner of Juan -Matías's father- and she is the mother of Joaquín -Matías's half-brother-. Writer and journalist, she was fundamental in her narrative maturation. He spent 12 years of transhumant coexistence with the Fernández Burzaco. "I was thinking how it would impress on Mati to dedicate itself to that universe of movement." Devoting himself to recounting a world at the opposite end of his possibilities seemed a provocation. The question that he hesitated at every family encounter but did not dare to express was when he would write about himself. “I had to start writing about him because, in his case, it is a brand that even defines his working method, it is not something lateral. His method is crossed by his conditions ”. Josefina did not know how to regulate this proposal, her proximity could be a disadvantage. It was a journalism professor, Marcelo Rodríguez,the one who threw the first stone. His subject, Graphic Techniques, was one of Matías's favorites. The day he went to look for the 10 he had taken in his final work, Rodríguez told him before saying goodbye:
-Why don't you write a book about yourself?
- ... I prefer to pay a journalist.
-If there is a free kick, Mascherano does not have to kick it, Messi has to kick it.
Finding her voice was not difficult.
“When he began to write about himself, he took an aesthetic leap.
Matías understood something and matured at a speed that he had not anticipated.
It was dazzling, I began to see everything I had inside that I didn't even suspect, ”says Licitra.
For Matías it was about observing himself without concessions
.
The gaze of the others appeared as an oblique bounce that registered with irony and curiosity.
He wrote wildly, perhaps in an attempt to answer certain questions.
“I wanted to know why I had endured so long, what had happened to my head;
if I had put in a defense mechanism that prevented me from seeing the disease ”.
He wandered his image in front of the mirror but he didn't look like anyone else.
What kept coming back was a question mark.
“I started out a little blind because I didn't know much about the disease.
I was always with my friends very in another and I never stopped to think ”.
"I did not want to see any disabled person because I felt hyper normal and in the same condition as my friends, I did not want to be pigeonholed into a group," says Matías about his childhood.
Since he was a boy, Matías always felt like one more.
In March 2004 he faced his first day of classes at the República del Salvador school.
He crossed the half block between his house and the school with his white coat and a red chair, accompanied by his parents.
They had just returned from a vacation in Costa del Este and was excited;
she had packed her supplies and backpack to start first grade.
Gabriela was a little scared, then she relaxed.
“Already the first day the teacher was waiting for him, she had prepared the classroom for him in a way that he could be with his chair.
We chose a public school because it was very inclusive ”.
The boys entered the classroom and the seats drew a circle.
- Can I sit here?
I want to take you.
Tomás Ghioldi sat down next to Matías and they didn't part anymore.
“I remember the classroom and seeing it.
Although he was striking, I talked to him and we liked soccer, we played Play or ball in the living room.
We shit laughing together ”.
What started that first day of school spread to a whole band of classmates.
For Matías it was “the first real group of friends that I made in my life, the strongest and that I still have.
I think it was because of Tomi that what happened next happened.
The first day I had already made a first friend, and at that moment there was no way to cut a relationship with other people ”.
In elementary school Matías used a walker to run and play soccer.
When he played a game, he would stay near a goalpost waiting for his moment.
Someone shouted
"pause, I'm going to pass it to Mati",
just as his team was about to lose the ball, and the round of foam rubber was thrown at him to get him to head. Once he scored a shotgun goal. After school, Tomás would stay for lunch at his friend's. Over time, the Fernández Burzaco house became the meeting point for trips to the plaza, outings to dances and the first encounters with the girls. They did teenage bullshit. They stole the sweets from the Chinese supermarket, they played the bottle, they went to the field to see Vélez. When he was admitted to the Garrahan, his friends came to visit him. "I don't remember anything we haven't done together," Tomás says today.
Matías never paid attention to limits. When he stayed at the house of his father, Juan, and his wife Josefina, he wanted to go to the same places as his three brothers. Josefina found it difficult to deal with the gaze of the others, “at the beginning it was difficult for me when we went to the zoo or somewhere else, it was hard for the children too. The only ones who took it naturally were his older brothers, the twins Juan and Agustín ”. Over time, the pieces were arranged, “I think it was a success how their parents faced the situation; Today I think it helped him to be who he is. In any case, he
paid attention to the looks that put him on an equal footing ”.
At least three times a year Matías suffered from a skin infection called infectious cellulitis. He had to stay in the Garrahan for several days and was knocked out with drugs. His friends had an intuitive understanding of what was going on but they weren't asking too much. He couldn't wait to get out of the hospital. "My doctor knew that I had a life outside and that I was not surrendered to my condition, but that I had set up another territory of control in which I was the protagonist." That force field allowed him to cut through the pain.
"I didn't want to see any disabled person because I felt hyper normal and in the same condition as my friends, I didn't want to be pigeonholed into a group." More than once Gabriela suggested that she start dance or soccer classes in a wheelchair;
He said no, he felt insulted.
The day he met Mayra Ordoñez, he completely ignored her. It was noon and Gabriela had prepared milanesas to have lunch with her and her mother. "They talked at the table, she listened very carefully to the words of my mother and hers." Matías went to play with his friends.
In 2018, twelve years later, he wanted to meet her.
He had a slight and impolite memory of the first meeting.
He asked their common pediatrician, Dr. Decastro, for the contact and wrote on his Facebook profile, -
"Hi, how are you, you remember me, who we are"
-.
I wanted to know what "the other" was like, her disability, her thoughts, her body.
He knows that they lead very different lives but there is a thread that unites them.
Mayra replied a few days later with happy emojis but she didn't want to meet.
Neither expose yourself.
Matías wrote him a letter.
"Even if it doesn't make sense, I love you," he told her.
Matias reviews some of his notes and texts published in Orsai magazine.
Photo Juano Tesone.
"Denial worked well for us"
To look at each other was to conjure ghosts. Matías knew that he could not leave his writing exercise intact. "I was going to go through a lot of states of depression and anguish but I tried to work with the truth." It was not the first time that he had to face his fears, but he was obliged to call them by name.
The passage to adulthood was cruel. He was finishing high school and had to leave his pediatric treatment with who had been his lifelong doctor to go to the care of a clinician at the Güemes Sanatorium. “We worked a lot with him, it cost him this period of leaving the hospital. It was quite good beyond the fact that it was a duel, ”explains Dr. Decastro. He reviews each word with the asepsis of his profession; grief is a normal stage studied by the medical literature. For this reason, since patients turn 15 years old, they work in a transition so that they take command of their life and their illness. This is a recent problem; people with this type of pathology did not survive adult care. "Now the clinician falls a meteorite from something he has no idea."
Matías had turned 18 years old and his life was going to boiling point. One morning in Plaza Irlanda he had a warning light. He had smoked joint with his friends and started to feel bad, he
thought his blood pressure had dropped but it was a panic attack
. It was 4 in the morning. Suddenly the sky was opening too wide, his throat tingled, he began to sweat, he felt dizzy. He believed he was on the brink of death. The shock was so great that he did not want to tell anyone except his therapist. That same feeling was repeated a few more times. He felt locked in his body. Writing was a way of letting go.
When Gabriela read her son's first texts, her chest constricted.
I thought “how lucky that now I can express what happens to him because before he told me 'nothing happens to me'”.
She always knew;
Matías's is a difficult body.
By message he shares his favorite, the one that made him wipe away his tears.
It's called
"Looking at the sea."
.
.
I
would
like
to not depend on anyone to
eat lamb with my hand
sleep without the respirator
that all the air in the sky takes over my nose.
I would like to go to the snail cemetery,
grab one with my hand and listen to
me look at me in the reflection of the green water,
the cheeks cupped,
the flat forehead.
Matías Fernández Burzaco
.
"It is beautiful because it speaks of the other part, the one that is not extraordinary." It was the first story he read, it seemed crude, sincere, brave. Finally, Matías pronounced what he had never said; what he would like to do and cannot: swim in a pool, fall in love with a woman, be able to be alone. His desire broke on the paper, also in his head. "Suddenly I thought why I couldn't sleep alone at home with a nurse, and why my mother went to her partner's house." Matías is an adult in a child's container. Gabriela touches her body. You should help him eat, dress, and bathe. “With a 23-year-old son, a mother is unprepared. That marks you, we are one ”.
Con su mouse, él escribe sobre la soledad y el deseo sexual. Durante la adolescencia lo transitó desde la periferia; esos primeros acercamientos con el sexo fueron difíciles. “Al estar muy rodeado de amigos y no tener una vida sexual como ellos, pensaba ‘no me queda otra que ser un tercero’. En la adolescencia me tocó estar un poco de costado, otro rol, capaz de enganchar a mi mejor amiga y mi mejor amigo. Como decir ‘yo sé que conmigo no vas a estar pero vas a estar con mi amigo’. Era una sensación rara de goce que yo no estaba haciendo en concreto pero posibilitaba que pasara”.
Un poco por impulso de sus amigos y sus hermanos; otro poco por curiosidad, se animó a tener su primera experiencia sexual. Juani, uno de sus hermanos mellizos, fue quien facilitó el encuentro con una asistente sexual para personas con diversidad funcional. Es uno de los relatos que escribió a escondidas. Matías fantaseaba con escenas anti climáticas y se resistía a pagar por un encuentro con una profesional. Tenía miedo pero finalmente lo hizo. “Creo que el libro me ayudó a dar la cara y decir ‘yo también quiero ser protagonista”, ahora tengo otro rol, por suerte. Ahora aparezco yo y puedo contar cómo fue esa experiencia”. De amor no habla en primera persona, atina a escribir que le gustaría ser tocado por alguien que lo quiera.
Matías Fernández Burzaco. Foto Juano Tesone.
“Escribimos para despejar una incógnita personal”
Su habitación está en penumbras, él tiene que ir rotando en su sueño para respirar mejor. A veces requiere del respirador para dormir. Siempre necesita un enfermero de noche. A los 10 años empezó a hacer apneas de sueño y tuvo una internación de un mes. La rutina era la de siempre, los antibióticos pasaban por las venas, Matías descansaba casi anestesiado, los síntomas amainaban, salía del hospital. Esa vez, Gabriela se lo quería llevar, pero la médica la frenó en seco. Se van de acá con enfermería nocturna. “Tener gente que venga a la casa me costó un montón. Nos sacaba la intimidad, soy un poco omnipotente y pensé que podía sola. No sabés lo que es que alguien venga a dormir a tu casa todos los días. Es difícil pero después te acostumbrás”.
Formas Propias, crónica de Matías Fernández Burzaco.
Todas las noches, Matías y su papá van a buscar a Ruth a su casa de Villa Lugano. Pasadas las dos de la mañana, Juan Fernández Burzaco deja al cuidado de ella a su hijo. Ruth le cae bien a Matías, quiere que mantenga su trabajo porque lo necesitan ella y su hija. Tuvo muchos enfermeros, de todo tipo. Enfermeros demandantes que pedían baño privado; enfermeros perversos que le daban palmaditas en la cola; enfermeros que no eran enfermeros. La presencia del cuidado como constante. Un universo que siempre le llamó la atención; sus historias extrañas, sus turnos de madrugada, el contacto con la enfermedad y la muerte. Despiertos cuando el resto duerme. “Los cuentos más turbios del zoológico de enfermeros que tuve pasaron por acá”. Cuando sufría sus ataques de pánico, su cuidador de turno contaba algún relato truculento. A Matías le fascinaba. Comenzó a recopilar sus historias y les dedica cientos de líneas en su próximo libro “Los despiertos”, que publicará este año. Esta vez, Matías le deja el protagonismo a otros actores que forman parte de su universo. El chico que aprieta la palabra y desató sus nudos gordianos está sediento de nuevas historias. Ni bestia, ni monstruo, ni genio, ni niño. Matías es escritor.
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