Javier Firpo
03/21/2021 15:00
Clarín.com
Society
Updated 03/21/2021 3:00 PM
He has just eaten a Milanese with noodles and a flan for dessert, although he says his "fever" still lasts for his beloved River's draw in the Superclásico.
Footballer with the
handle
, Mateo Figueredo is 17 years old, he is from Formosa and is admitted to the Juan D. Perón High Complexity Hospital in the provincial capital.
He suffers from cystic fibrosis, a respiratory disease that
has damaged his lungs so badly that he could not have a transplant
.
Mateo's sweetness and optimism are bulletproof.
His fight for life is moving.
"
I'm used to hospitalizations, I'm at home for fifteen days, fifteen here in hospital
, that's how the hand has been since the middle of last year. This last time it was brave -sighs but smiling-, it was hard for me to breathe, my rib cage hurt a lot when coughing, it becomes difficult, but
I have reasons to continue
. My mother does not detach from me for a moment, she is a lioness, and my father is taking care of my 3-year-old brother Joel, who is waiting for me to play. "
Leaning on the head of the bed, glued to the respirator 24 hours a day, the video call with
Clarín
shows Mateo excited, who at first glance seems younger.
"Because of the disease
I look smaller, I measure 1.50 and weight 35 kilos ...
The truth is that it is not much, but I will have time to gain weight,
I trust the miracle pills
, which today are the only thing that will save me life, "he clasps his hands and looks at the ceiling, in supplication
"I am confident that I will succeed, I have many things to do in life," says Mateo Figueredo, who today has the drug Trikafta as his only salvation.
When he talks about "miracle pills", Mateo refers to Trikafta, an imported drug whose acquisition for a treatment ranges from 300 thousand dollars.
It happens that his social work, Include Health.
of the federal program that depends on the Ministry of Health of the Nation, said that
it cannot take charge of such an amount.
"On November 23, 2020, we initiated an amparo action in the Federal Court of Formosa against the provincial government and the Incluir Salud program,
demanding an urgent precautionary measure ordering the provision of the drug,
" explains lawyer Martín Hernández.
After comings and goings, on January 29 last, Judge Perez Greppo "issued a
precautionary measure in favor of Mateo, ordering the immediate delivery of the medicine
. Including Salud was notified and the juvenile adviser was presented, ruling that the But there are no answers and the
breach was reported on
February 10
, so the Judge decided that same day to order the provision to include Health within 48 hours, "Hernández describes.
Here you can read the rejection of the government of Formosa to the injunction of Justice to provide the drug Trikafta to Mateo.
When it seemed that the road was paving, Juana Cantero, the director of Including Health in Formosa, said that
"they will not comply because Mateo Figueredo does not need the medication,
something as incredible as it is ridiculous. Days later, another breach was reported, sanctions were requested strong economics and
a criminal complaint
was made
for judicial disobedience
, "says the lawyer who adds.
"They are grasped that the medicine (Trikafta) is not added to the Compulsory Medical Program", of the law promulgated last August.
"It is inapplicable in several of its articles",
had expressed the former Minister of Health of the Nation, Ginés González García, who never was in favor of the sanction of the Comprehensive Protection Law for people with Cystic Fibrosis.
The neuralgic point was in article 6, which on the one hand
guaranteed "comprehensive coverage of 100 percent of the drugs"
and on the other prohibited "their substitution and / or modification by the social work, prepaid medicine company and the public health sector ".
So many sticks in the wheel, however, do not undermine the spirit of Mateo, who feeds his Facebook by telling his life story and asking for help with messages such as
"Health is a right of the people, that it is fulfilled is a duty of the State."
She is also in charge of spreading food dishes that her father prepares to raise funds and help with the difficult family situation.
"Mom can't work, because she takes care of me and my little brother, and Dad does all kinds of jobs, from fixing refrigerators and air conditioners to preparing roasts and chicken on the grill."
Mateo, along with his father Daniel, his mother Laura and his little brother Joel.
"Health is a right of the people, that it is fulfilled is a duty of the State," he wrote on his Facebook page.
The letter to the president in handwriting.
"Don't let me die in a hospital bed. I ask you for an opportunity, I want to live and dream, not feel more pain when breathing," Mateo asks President Alberto Fernández.
Weeks ago, in his own handwriting, Mateo had the idea of writing a letter to President Alberto Fernández, "because I don't have all the time in the world either, I need to resolve my delicate situation ... I don't want to die like that."
A passage from the letter says: "Here in Formosa
the Justice rejected my request and I feel abandoned
and unprotected, that is why I am writing to you, Mr. President. You said that health is a priority.
Do not let me die in a hospital bed
. Not
anymore
. I want to feel more pain, I want a normal life, like any boy my age. "
The two-page letter, written in blue ink, very neatly, adds: "
I am tired of being admitted, of the punctures
, of going to the operating room, of the oxygen equipment, of the dozens of medications that I have to take daily. I want to go back to my house, to be with my dad and my little brother,
I ask him for an opportunity, I want to live and dream, not feel pain when breathing, "
wrote Mateo, who in dream train would like to be a doctor" specialist in chronic diseases. I see how I they attend and
I want to be a hero like Doctor Montenegro, who lives saving my life
".
Mateo says that he watches TV during his hospitalization and found out how the people of Formosa rebelled against the despotism and tyranny of its governor Gildo Insfrán -who does not authorize his medicine- and makes a face of satisfaction with his mother Laura.
"
We could not believe the images we saw
. We said 'this is not Formosa, it is not our town'. It made me very happy and at the same time I felt sorry and angry because, if I had felt good and not been in the hospital,
I would have been sure there supporting the march
".
Being electrodependent
makes Mateo a hostage to oxygen
, so his life for more than a year, when his health began to decline, is completely indoors.
"I can't play ball, run, wallow with my little brother, meet my friends, have a drink with them, or help my dad with any homework.
Nothing
until I get my medication, that's why I call it the miracle pill
", account without dramatizing a panorama that shatters the soul.
Since 2014, the Figueredo family has
lived in a 16-square-meter room, with a bathroom,
clearly a space not suitable for four people, less for a boy with a serious respiratory illness.
"It is a place that we are trying to improve so that Mateo does not get worse, because the house, which was given by the Formosan government to families with a disabled member,
has humidity and a lot of dust, which makes his respiratory tract difficult,
" says Laura, his mom.
Mateo, in one of his hospitalizations, was visited by his fellow countryman Gastón Giménez, the footballer who played in Vélez and now plays in the North American league.
The deterioration of Mateo's health, which has nothing to do with his state of mind, had its climax when he was discarded from being part of the INCUCAI list of possible transplants.
"
Two pneumothoraces in the last time were enough to damage his little lungs
, so the doctors told us that he would not tolerate a double lung intervention, so the only way out is medication."
With a wide smile,
Mateo dreamed that he received an answer from the president "telling me that the medicine was at my disposal
. Many times I dream that but awake and a smile escapes me, but this time no, I was asleep", graph this little boy who emphasizes that "positive thoughts help me to fight it, because my mother and father taught me not to lower my arms, not to give up so easily", points out Mateo, who is being medicated with
morphine and methadone "to calm those punctures that make me see the stars
.
"
Always with a smile.