Anano Lartsuliani

At 1 year and 2 months old, I received my diagnosis. I can remember my struggle to understand my situation, understanding what spinal muscle atrophy is, and what that meant for my life.

 

Often people would ask me, “Why are you in a wheelchair?” and I would answer, “My leg hurts”. I didn’t see a reason to try and explain to another person a situation which I myself didn’t fully understand yet.

 

I now realize how important it is for a person to understand these things from the beginning. That is exactly why I decided to make this information more available to others. Information on my diagnosis is practically not available in the Georgian language. This is why, for the past year, I have been working on a website regarding spinal muscular atrophy.

 

What I want society to practice the most is acceptance; through awareness, education, and most importantly humor. These limitations we feel are not only present in the people around us - they are within our environments, our systems, in the way we communicate.

 

Recently, I was in Brussels - this was my first experience travelling abroad. For the first time ever, I got to not only use, but enjoy, public transport. I felt the possibility of true freedom there; where services are functional. I felt the ease of life; where the environment doesn’t limit you.

 

In a year I would probably ask myself: Has the website come to life?

 

And I hope that I’ll have my answer ready - yes, it came to life. And with it other people began breathing too.

 

Check out my personal page - Lartsuliani - on Facebook and Instagram where I share my thoughts and experiences.