Translated for BabelFAmily by Ayse Aktas and Caroline Williamson 

My name is Gülsüm. I am 25 years old, married and live in Bursa. Nowadays I am experiencing the toughest but also the most beautiful days of my life.
I have had problems with my balance for a very long time. For this reason I visited a couple of doctors, but they always told me that it was due to different reasons, such as my weight, bones or even lack of nutrition. One and a half years ago I never thought that there might be a neurological reason for my problems. The people around me started to make me worry and told me that these symptoms might be because of a serious illness. After that I went back to see several doctors. I actually just wanted to prove to those people that my problems were caused by stress and were not a neurological problem.
Everything was all right. My doctor told me what I wanted to hear and also told me that I might have problems carrying heavy things. It upset me to think that I will always have problems carrying things, but then again, I was happy that it was not a neurological problem.

Translated for BabelFAmily by Emrecan Özeler

My name is Ömer Ocak. I was born on 1 May 1978 in Kars, on the northeast edge of Turkey. If you ever get the opportunity to come here, I would be delighted to welcome you to my city.
I didn’t have any health problems at primary school or middle school and I wasn’t an unsuccessful student. My elder brother and sister also suffer from FA. Despite the fact that I had been to the doctor many times with them, the doctors never told us that I might also be suffering from FA. During my sophomore year (at around 15 years of age) I was also showing the symptoms, but it took me nine years to accept it. I graduated from high school. I hadn’t been getting out of the house for a long time. I managed to gain preliminary places at university both at the ages of 17 and 19 but I didn’t study: it was really hard to sit in a wheelchair, particularly when it wasn’t through choice. I didn’t receive any psychological help throughout this period. I don’t know whether this is the case in other countries, but I think it is necessary.

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.

Translation for BabelFAmily: Marina Popova 

14th April 1977 was a rather gloomy day in Russia, but a young couple – a teacher and an engineer – were celebrating. They had just had a lovely healthy baby girl. Her weight was normal, her voice was loud, her face was plump and she fed well. The young parents spent some time thinking of a name for her and agreed on Katya. The father went to the registry office but something made him change his mind and he wrote Irina in the field for the baby's name.  The mother was surprised but approved the choice. And still, after 34 years, they accept each other's choices, living in love and peace, although not everything is so rosy.

When their lovely, beautiful and talented daughter was fifteen, her dance teacher was perplexed by Irina's slight loss of coordination. She informed the parents. They were no less surprised and confused. The nineties in Russia were a time of chaos and indifference – no one knew anything and there were no sources of information for them. Meanwhile, the loss of coordination was progressing. Irina became very tired, she stumbled and fell for no reason, she ran more slowly than her peers.