Breathe
By Barbara Anderson
Luis Juez is a senator in Argentina. He has a daughter, Mily, also with cerebral palsy. We have known each other since 2007 and have been in contact in recent years because of my activism for the rights of people with disabilities.
Last week he was at a private dinner at the Olivos residence with Argentine President Javier Milei.
At one point he decided to ask her if she had seen the movie "The Two Hemispheres of Lucca". Immediately the conversation changed and everything focused on this story.
"While I was telling him about Cytotron, about this technology they discovered in India, he immediately took his cell phone and started chatting. I thought he was no longer interested in the subject and started answering messages," Juez told me a few days ago.
But far from being unfocused, he was writing at that moment by Whatsapp to his chancellor, Gerardo Werthein, who was on tour in the United Arab Emirates.
While the table was still chatting that night, my phone rang in Mexico City: it was Werthein having breakfast from Abu Dhabi and he asked me for an urgent call.
He interviewed Andrés -my husband/partner/monkey- and me.
He asked for details, he consulted us on everything from the status of this technology in Mexico (which deserves a film in itself) to the way the device works. We talked about proteins, tissues, cells, science, permits, costs, production time, legal issues and human issues. We talked about the importance of innovation in healthcare.
He confirmed that upon his return to Buenos Aires he was going to put together a plan to achieve the importation from India of Cytotron to start a medical protocol for its safe use and authorized by the National Administration of Medicines, Food and Medical Technology (the Argentine Cofepris). We are generating all the documents and connections between -now- the three countries.
In a couple of hours, the film moved a storm of intentions and actual plans for medical testing.
This wonderful news happens while a war is still cooking in my social networks, my phone, my mail and any way of contacting me.
First, because hundreds of families come to us looking for a neurological treatment that in Monterrey is given in exchange for a very high sum of money disguised as a "disinterested contribution to scientific research" from a private company, and then they complain to us because the sums are high or the lines are long.
Secondly, by some of the disability groups and activists who seem to be annoyed or offended by our impetus to seek possibilities of improvement for Lucca's condition, instead of stoically accepting the situation. People facing an equally steep and slow road have republished ad nauseam a letter from neurologists warning of the experimentality of the experimental treatment (nothing else was ever said) we encountered. It has been republished by the same people I have supported to get other treatments - also not approved by the government - so that their children could have some improvement. And a few years ago we might have dismissed this as social networking nonsense, but now what happens on networks *is* reality, so the "gesture" takes on importance.
The movie (and my book, and my story, and my dark circles under my eyes) tells the story of a family that gambles everything for a chance, when medicine, therapy schools and "the available knowledge" said there was none. We did well, fortunately, but now the price to pay is that a pack of "concerned people" for whom intellectual curiosity was forgotten in elementary school, come to claim us for not following their precepts.
