Ten years ago, he was diagnosed with Kennedy Disease and gives a hopeful message: “It empowered me to be better.”

It was a day like any other, Ariel Martinez (44), was on his way to do his job, installing a security camera in a city building. He drove his car, parked, and when he wanted to get out he tripped. That fall didn’t alarm him, he associated it with a distraction.

The weeks passed. Ariel’s life was divided between his profession in the area of ​​systems in a multinational company, sports – such as judo and basketball – and study. But all that was developing became increasingly complex and difficult to sustain. It was no longer a slip: he had begun to drag his feet. “At 29, almost 30 years old, I was forced to sell my systems installation business because I had to move and I couldn’t do it,” he tells Infobae.

“With my wife, Isabel (45), we went to see a clinical doctor who quickly referred me to a neurologist, ”he says. “I had a general fatigue. And the first doctors told me that it was because of daily overexertion, a generalized stress due to so much activity ”, remember as the beginning of everything.

The other symptoms did not take long to appear: difficulty swallowing, breathing problems and modulating. “I stopped being the same as before,” he says. After a series of studies, the specialist gave his diagnosis: “You have ALS, amyotrophic lateral sclerosis.” “It was crude, he told me, that life expectancy was a few years – three, four – at most. At that moment the world fell apart. I collapsed ”, admits.

ALS is a progressive disease of the nervous system, which weakens muscles and drastically affects physical functions. The main symptom is muscle weakness, as nerve cells break down. At the moment, the cause is unknown and there is no cure.

They were almost two years of great stress for Ariel where she lost part of her autonomy and had to reinvent herself at work. “Until I assimilated the diagnosis and accepted it, I lived with a lot of emotional pain, because with Isabel we had many projects for the future. It was as if a part of me had died “, recognize.

“The disability changed my life, from the diagnosis there were many people who approached me and other people – who did not expect – who disappeared,” he adds.

The second hit

At a medical check-up, back in 2010, Ariel met the doctor Santiago Ordoñez, President of the Association for Muscular Dystrophy (ADM). “He looked at me and was not convinced of my diagnosis. He asked me to do some complementary studies ”. The answer was not long in coming: “It was no longer about ALS, but about Kennedy disease … which is very rare but less aggressive.”

Known as KD, it is a congenital disorder that begins to manifest around 30 years of life. It is progressive neurodegenerative. There is no cure, although there is a treatment to improve quality of life. Since then Ariel has been doing weekly kinesiology sessions to strengthen her muscles. “The only thing that costs me is getting around. I can’t stand up because I lose my stability, I only walk between 20 and 30 meters ”, he says.

An arduous process of deconstruction began. “From weakness I drew strength. I broke with the medical projections. I channeled my limitations in work performance, in the kitchen, which is something I enjoy, and in cars, another of my passions. I did everything that I set out to do. I am not a victim ”.

That is why he did not hesitate to be part of Continue Walking, a platform It seeks to inform, make visible and improve the quality of life of people with NMDs launched by the Muscular Dystrophy Association. “It is a community, a kind of social network, created by the patients and specialists themselves, where all the issues that we face on a daily basis are addressed.”

And he continues: “There is still a lot of ignorance and a certain taboo, that is why I think it is important to be able to have a rich exchange with others who are in the same situation. The world is not yet adapted for people with disabilities, not only from the infrastructure, but also the lack of information”.

“You make it cool or you’re going to waste it”

In the middle of all that Ariel and Isabel, they dreamed of being parents. “I knew it would be very complex naturally since my condition weakens the quality of the sperm.” Together they chose to undergo assisted fertilization.

There were three failed attempts, until the third fired. “We got pregnant with a boy: Lucas. At seven months of gestation, Isabel had heavy losses. In the hospital that treated her they did an ultrasound they discovered that my son was dead”. All of this happened on December 31, 2014. “The worst end of the year of my life.”

The rematch came just a few months ago, in August 2020. After having tried all the paths, they could have the guardianship of two adolescents from Salta, 14 and 17 years old. “My disability was a limitation when it came to achieving the process, the psychologists said that I did not ‘have a tolerance for frustration’. A joke”. They had to appeal to the Court, which ruled in favor, to achieve their wish.

Today Ariel works remotely from home. He speaks openly of his disorder, on the contrary he is grateful for the learning. “This illness changed my life in a positive way. It took my health, it is a fact, but it made me understand that I am not a victim, and that with everything I have I can do a lot. It empowered me to be better ”.

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