Karina Niebla
08/07/2021 18:43
Clarín.com
Cities
Updated 08/07/2021 18:43
“Four plus four is eight.
Plus three, eleven.
Plus twelve, 23. Plus 15, is 38. Plus 18 is 56 ”.
Nachito is a math fan and has fun doing math until Sunday afternoon in the park.
He also likes to play soccer and basketball, ride his bike, and eat pancakes.
Ignacio Tadeo Mavian
is a seven-year-old boy like any other.
But for two months he stopped doing almost all of that due to an illness.
Diffuse intrinsic trunk glioma (DIPG) is called this
brain stem cancer
, which has no treatment in Argentina.
But yes in the United States, for $ 350,000.
Adriana Monte and Matías Mavian do not sit idly by.
Neither now nor when the first signs of the disease started, when Nachito
began to walk crookedly
, did one eye deviate, he lost mobility in the right half of his body.
Later, also hearing, swallowing, speaking.
But Nachito fights: thanks to lightning and chemo, today he can eat soft foods and speak again, although with difficulty.
He communicates anyway: he has a cardboard board put together by his psychologist, with which he marks letter by letter what he wants to say.
“Make us complete sentences.
It says, 'Mom, put me on Netflix.'
The other day he asked us to make pancakes for him ”, Adriana says proudly.
She and Matías
exhausted everything that local medicine offers
: 28 sessions of rays, seven of chemo, occupational therapy, kinesiology, psychological support.
For two months, this family changed their house in Bernal for a clinic in Palermo.
Now Nachito continues with home treatment and moves with a pediatric posture chair that also supports his head and hips.
Everything helps, but it is still a palliative, which "decompresses the nerves and shrinks the tumor," explains Matías.
For the disease to truly resolve, your child needs
specific cancer treatment
.
One that, they found out, is offered in clinics in Spain, Australia, the United States.
Ignacio's family carried out all possible treatments in the country, but they were only palliative.
After dozens of emails and help from friends, Nachito and his family were admitted to the Burzynski Clinic, the clinic of Dr. Stanislaw Burzynski in Houston, Texas.
They were finally convinced of the success of the treatment in other patients, such as a girl from Cordoba whom Adriana and Matías contacted and who was treated there ten years ago.
He also had DIPG, which he
remitted completely
.
With the admission done, now the other part is missing:
getting $ 350,000
to pay for three to five weeks of hospitalization and treatment at the Houston clinic, in addition to the monthly fees for the use of an infusion pump that administers the medication at home. for another year.
They have little time:
Nachito must start treatment in less than a month
.
For this reason, Adriana and Martín launched a campaign on the networks and disseminated their data to whoever wants to collaborate.
Money can be transferred to the Banco Provincia account number 537105/8, whose CBU is 0140045803517553710584, or to the one opened in Mercado Pago, whose alias is MATMAV.MP and its CVU, 0000003100062244154712. There is more information on the Instagram account
@todosxnachitotadeo
.
The campaign flyer by Nachito.
Through this campaign they also asked Santiago Maratea for help.
Weeks ago, the influencer collected donations for 51,000 of the $ 255,000 needed for the treatment of Ezra, a 2-year-old boy from Luján who will be treated at the same Houston clinic as Nachito and for the same disease.
How it all started
Adriana and Matías remember well how this nightmare started on May 19.
“In the morning Nachito had a class at Zoom.
At night I was in intensive care,
”she says.
Days ago he had vomiting and pain in his neck.
Then came the diagnosis, the next day the valve that helps to drain fluid from the brain, later the biopsy that confirmed the aggressiveness of the tumor.
“At first we asked ourselves: 'What did we do wrong?', 'Why does he have it?', 'Is it genetic?'
But this tumor has no explanation.
It is only known that it occurs mostly in children between 4 and 12 years old ”, explains Adriana.
Nachito was admitted for treatment at the Burzynski Clinic in Texas.
It should start in a month.
Nachito has fought since he was born.
After delivery, she developed pulmonary hypertension: she was breathing as if she were still in the womb, for which she spent 24 days in “Neo”.
As a result of that stay, he had osteomyelitis, an infection of the bones by bacteria that lodged in his hip.
He went to surgery and then two years of chronic treatment.
"When he had that, the doctors told us to say goodbye to him, but he
fought her and got ahead,
" Adriana recalls.
Now we know that it will be the same because he is a very particular boy, a born warrior.
We are very believers and we have a lot of faith: we believe that
Nacho is going for his miracle
”.
ACE
Look also
#TodosPorFede: after a solidarity campaign, a 6-year-old boy traveled from Córdoba to Spain for an expensive treatment
A donation that Santi Maratea collected could not be delivered by AFIP controls