When they were told that their 8-year-old son Benjamin had a rare, lethal, degenerative disease called adenoleukodystrophy (ADL), the Bustos Fierro weren't surprised. They even knew how to act. They are parents of five children, 4 of whom suffer from it. And, 12 years ago, two of them, Agustín and Joaquín, underwent an operation that helped them move forward.
Benjamin's path was a bone marrow transplant, his parents Cecilia and Javier already had the experience, through their other two children, of doing it in a specialized hospital in Minnesota, United States.
They tried to get their prepaid to take care of the expenses. However, the amparo filed in court was rejected and finally this Wednesday, after carrying out a solidarity campaign to raise funds, Benjamin underwent surgery.
According to the Mendoza newspaper Mdz, in the first instance, the Federal Court 2 in charge of Alejandro Sánchez Freytes, had rejected the request.
Agustín and Joaquín, upon returning from the operations they underwent in 2013. Photo: Daniel Cáceres
The family appealed the decision to the Federal Court, which upheld that decision, arguing that such medical intervention "can be performed in institutions in Argentina." At the same time, he remarked that three hospitals "are qualified to perform the procedure: the Austral, the Private Hospital in Córdoba and the Garrahan."
Although there was the possibility of taking the case to the Supreme Court of Justice, as it is a degenerative disease that progresses quickly and with important consequences, the Bustos Fuente decided to launch a campaign, "All for Benja", which was successful.
They had done the same thing in 2011 for Agustín. "A miracle for Agustín" was the name given at the time to the project to raise money that today has become a foundation to collaborate with children suffering from ADL.
Benjamin's surgery and treatment is performed at the University of Minnesota's M. Health Fairview Center for Pediatrics, where his siblings were also treated.
The attempt to avoid the solidarity campaign and get the prepaid company together with the State to take charge of the procedure in the United States began on March 27 of this year, when they filed the injunction.
On June 28, the process ended after the Federal Court of Appeals said no to the petition in a second instance. That is, after an appeal by the family.
Despite the position of the courts, the Bustos Fierro decided to move forward with the treatment option in the United States because, according to the newspaper La Voz, they understand that the only "real possibilities of life" are in the North American medical center.
To get to the operation, without travel and accommodation, they had to raise $788,974. They did so through the dissemination of the case on social media on the Instagram account @todosporbenjaa, which has 104 thousand followers.
The campaign began in July and involved figures from the worlds of entertainment, sports and politics.
Cecilia and Javier have two more children: Matías and Sofía. Matías has the same disease but did not undergo that treatment. And Sofia was the bone marrow donor 12 years ago.
In 2011, a few days after his 10th birthday, Joaquín Bustos Fierro was the first in the family to receive a successful transplant.
Augustine was going to undergo the operation first, and because of this, the campaign was named after him. Due to a health issue, the medical board had decided at that time to postpone Agustín's transplant, which was only carried out in August of that year.
The most common form of adrenoleukodystrophy is X-linked. It is caused by a genetic defect and is hereditary, passed down from parents to children. It affects men more intensely than women. This condition leads to irreversible consequences such as loss of mobility, sight and speech.