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.

This was the beginning of a race. The father was busy earning money; the mother was trying to find someone who, in return for this money, would restore Irina's health. And there were many of those who promised to do so.  There were fashionable then psychic healers; there were osteopaths, who suddenly discovered their own healing talents; there were wise old women with their ancient potions and recipes; there were hereditary healers and herbalists, who loved both nature and money; there were also uneducated budding chiropractors and many others. Later, when, in 1996, Irina was diagnosed with diabetes, and a silver-haired professor in the hospital suggested it might have been Friedreich's ataxia, the race intensified. Everything became much more serious. There were professors in neurological clinics of Moscow, St Petersburg, Germany and South Korea. If only one had collected all the money spent on these consultations, one would have been able to afford a villa on the French Riviera and live without worries...

Irina is me. I'm 34 years old now. I'm still living with my parents. We now know what  Friedreich's ataxia is. We know what stage it is at and what will happen in the future. We have moved to a town in the south, where the sun shines almost all year round and the trees are laden with fruit. We live quietly: flat, allotment, drives to the seaside...

What do I think about the future? Nothing. I'm trying not to think of it because if I do, I will inevitably get depressed. I hate being miserable and depressed. I love life! I graduated from a linguistics institute. I write film scripts – for myself at the moment, but there is a possibility of professional development. I go to the gym. I write poems for my friends' birthdays. I'm a huge fan of biathlon. I love riding horses and a snowmobile. I also love sunbathing.

Thanks to my parents, I don't know the what hunger is. I've never been insulted in the street or bullied by my peers at school and university. My parents are my full time carers. I've become their raison d'être, and I more and more often think of living independently.