Hi everyone,

My name is Andrei, I am twenty years old and I live in Romania.

The first ten years of my life were alright, to say the least, they were actually awesome. I was a sports fan, I used to do a lot of sports and I loved getting out and enjoying the beauty of nature. However, my parents had always noticed certain issues I was having with balance and coordination.

At the age of twelve, after a chickenpox that exacerbated my problems, I went to see several doctors and underwent many medical investigations, without receiving the correct diagnosis. I was told that I was in a recovery process after an infection caused by chickenpox.

At fourteen, while I was climbing the stairs to get to my apartment, I became exhausted for the first time in my life. It was very frightening, as I had never before experienced such a feeling of exhaustion. This experience induced a scary thought in my mind: that something really bad and apparently progressive was happening to me. This was proven right when at fifteen years old I was diagnosed with Friedreich’s ataxia.

Since then, my parents and I have been battling with probably the most deceptive of illnesses. Friedreich’s ataxia is an enemy that looks mild initially; an enemy you think you can deal with, you can live with. Later you realize this is not true. It’s a very powerful enemy, who attacks you on several fronts and pushes you into a narrower and narrower “space”, permitting you fewer and fewer possibilities at hand. You cannot hold your ground because you are actually on quicksand.

Once we lived in a large “space” with all the “doors” largely opened in front of us. Now this “space” is becoming smaller and smaller and one by one the “doors” are slammed in our face. It is frustrating to be captured in such a “space” that offers you fewer and fewer options. We had to adapt continuously, to find solutions in order to live our life, to continue to do what we liked to do.

However, I haven’t lost my hope. I haven’t stopped dreaming that one day I will walk and do sports again.

Modern medicine shows promise for a cure.

Best wishes,

Andrei