Andrei Cebotari

My name is Andrei Cebotari. I am 37 years old, I live in the small Moldovan town of Lipcani, and my whole life is a continuous struggle. A struggle with my own body, a struggle with a conservative society, and most importantly, a struggle with a bureaucratic system that often fails to notice people like me.

I have severe Spinal Muscular Atrophy (SMA). But this article isn't about diagnoses. It's about learning to accept yourself, finding windows to the world through technology, and why I decided it's time to change our state's attitude toward patients like me.

Two Steps and a Broken Tea Set

SMA entered my life early. The first symptoms appeared at about a year and three months, and by the age of two, doctors made the final diagnosis.

In childhood, I could stand on my feet, but I took only two or three independent steps in my entire life. I still clearly remember that piercing fear: I am standing, my mom gently begs me to take just one more little step, and I simply cannot. I stand as if paralyzed, unable to move from the spot.

Nevertheless, I was quite an active child. I crawled a lot, cheerfully moved around the house, holding on to chairs and furniture. At the age of three, I even managed to climb onto the table where my mom's favorite tea set was, and pushed it to the floor. It smashed to pieces, and I found it incredibly funny back then. Childhood took its course, despite everything.

Until I was five, my parents were in a desperate search for a cure. We relentlessly visited doctors, healers, and traditional medicine practitioners. We tried absolutely any available treatment methods, even the most unbelievable ones: they bathed me in milk, wrapped me in fabrics soaked in special herbs. My parents clung to any hope.

Loss and Darkness

When I was about six years old, my sister was born. There were two of us now, traveling to healers became too exhausting, and those trips stopped.

At seven, I started my education. Teachers came to my home, and I genuinely enjoyed gaining knowledge. I successfully finished nine grades, but then the educational system presented me with a harsh reality: either I start attending school in person, or my education ends there. Since there was no one to take me to classes, my formal education abruptly stopped.

My sister and I were very close. She also had SMA, but in a much more severe form than mine. In 2010, when she was only 16, she passed away. Due to medical negligence, she suffocated during a bout of pneumonia.

Her passing was a crushing blow for me. For a long time, I simply couldn't recover. I fell into a severe depression. Living in a highly conservative society that does not accept people with disabilities, and simultaneously trying to survive such a loss—is a path you wouldn't wish on your enemy. I walked a very long road to self-awareness and acceptance of my physical reality.

A Window to the World: Technology and AI

Even though my physical abilities were fading, I found freedom in the digital world. Today, technology is my hands and my feet.

I dove deeply into IT: I mastered Windows administration, website creation, and learned to write scripts for task automation and adaptive gaming. I actively work with neural networks and artificial intelligence (Stable Diffusion, ComfyUI), creating complex visual content. I independently handle design and finding solutions for alternative wheelchair and tech controls. The digital world has erased the boundaries of disability for me.

My Main Battle: The Campaign for SMA Treatment in Moldova

For the past few years, I have been fighting an exhausting bureaucratic war. Effective treatments for adult SMA patients exist in the world (such as Risdiplam and Spinraza). They can stop the progression of the disease, restore the ability to chew, swallow, and move hands normally.

But in Moldova, adults with SMA are "invisible" to the healthcare system. I had to spend years restoring my Romanian citizenship and knocking on the doors of foreign passport offices, hospitals, and appealing to the Romanian Ombudsman just to gain access to the treatment I have a right to.

I realized one thing: it shouldn't be this way. People shouldn't have to flee their country or humiliate themselves for the right to breathe and live.

That is exactly why I am now launching a campaign to fight for SMA therapy in Moldova. My goals:

Achieve transparency: Find out why adult SMA patients are excluded from national treatment programs in our country.

Unite forces: Create an information platform for SMA patients in Moldova so that our voices are heard by the Ministry of Health.

Change the system: Ensure that pathogenetic therapy becomes accessible at home, in Moldova, without the need to go through a bureaucratic hell abroad.

I have taken only three independent steps in my life. But now I am ready to take the biggest step toward change. And I invite you to join me.