“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 He 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 he started walking crooked, one eye was diverted, in the right half of the body he lost mobility. 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. The same communicates: 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 they 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 really subside, your child needs a 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. It also had DIPG, which completely remitted.
With the admission made, now the other part is missing: get $ 350,000 to pay for three to five weeks of hospitalization and treatment at the Houston clinic, plus monthly fees for the use of an infusion pump that delivers medication at home for another year.
They have little time: Nachito should 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 in 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 dollars 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 illness.
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, so 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 fought her and got ahead -Remember Adriana-. Now we know that it will be the same because he is a very particular boy, a born warrior. We are very believers and have a lot of faith: we believe that Nacho goes for his miracle”.