From the garden of his new home in Laguna del Sol, Stephen Bullrich He laughs and smiles hopefully with his dog, who also poses in front of the gente cameras. At 52, Former Senator Struggles to Find a Cure Against Amyotrophic Lateral Sclerosis (ALS)Which attacks your nervous and muscular systems.
,ALS. We are all involved in this fight in search of a cure for”, Lanza Maria Eugenia SequirosoEx-senator’s wife also invited Indiarestless Jack Russell, his faithful canine companion. The support of his family including the four-legged member motivates him not to give up.
Sitting on her feet, around her wheelchair and guarding her walk, India is the shadow of the former national senator: wherever she goes, she is. Loyal to his human friend, he accompanies her everywhere, while it doesn’t take long to give her a smile and a variety of hugs.
Within the framework of April’s conception of an “exclusive disease”, Esteban Bulrich receives Gente in his home to talk about his life and his fight to defeat ALS.
ALS. Esteban Bulrich and his family fight against
The news of the illness of the former provincial senator, national deputy, city of Buenos Aires and Minister of Social Development and Education of Buenos Aires and the nation emerged on April 28, 2021. However, the first warning of a disappointing past was the process that began in September 2020.
“We noticed at home what began to be mentioned in a public and sad way in his work sessions: that he seemed intoxicated when he spoke”, goes behind dryer Feather Amyotrophic Lateral Sclerosis (ALS) Which attacks her husband’s nervous and muscular system.
after going to the doctor He ruled it was a tense picture, “Of course, we came from a difficult quarantine. At home we strictly respect isolation,” Sekiros says. And he adds: “Add to that we live in a mini-apartment in Nez, plus a certain impotence that he felt from the Senate before the government changed. And, yes, it set off the tension thing.”
“I don’t know what my mission is. It’s being explored and it’s not alone. For now, I pour that energy into the foundation, helping take a census of ALS patients to find out how many and how much we need to help, and trying to do everything in my power to find a cure. Also, in getting funding for all of this, which is a necessary step and probably the most is neglected”.
The condition continued to worsen and in February of the following year he was diagnosed with a motor neuron, in the United States he ended up confirming amyotrophic lateral sclerosis. Later, travels began between Argentina and the US in search of a solution.
Communications to voters, society in general and their political peers did not reach until April of the following year. The former senator’s wife says a person with ALS is given a life span of between 2 and 5 years from the first symptoms.,
The ELA forced him to set priorities, and in the first days of last December Bulrich decided to give up his mandate as national senator for the province of Buenos Aires, to which he was elected in 2017 with 42.15% of the vote. ,nothing about who i am tells me this is the path i want to follow”, he expressed in the speech with which he bid goodbye to his back in the National Congress.
Esteban Bulrich Foundation
Before explaining to the rest of the senators the gravity of the picture and the decision to end his term, the former senator embarked on a new project: Esteban Bulrich Foundationthat promotes research to find a cure for disease
,We made this because there’s a cure for ALS, you just have to find it, And it can’t be found because there is no structure to look for. Especially in Argentina, where there are institutions that look after those of us who have this disease. It happens that there is a lack of coordination and teamwork, ”Bullrich said in a conversation with People.
Using the voice system My Own Voice (the platform that allows him to communicate), he continued: “From a register that brings together all people with this type of sclerosis, to an organization that is itself forces us to request, for example, experimental treatments, which are fundamental actions to begin to find the light at the end of the tunnel. If it is not for us, then for those to come”.
Interview and note print: Leonardo Ibanez
digital note: Camilla Ceratti
photos and footage: Christian Baleira and Fabian Uset
video editing: christian calvani
Following journalism on various platforms: Elizabeth Correa
We thank Constanza Suarez (PEL communication paradigm)
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