"I was born the third child of my parents. My mother told me that I was very, very restless in my mother's womb and that I kept turning around. For the first week after my birth I was very restless and fidgety, but after that I developed "normally" for the next few months.

  

My parents had had my brothers and sisters before me, so they had some experience with child development. They didn't mind that I didn't start walking until I was 19 months old (some children take a little longer for some things, don't they?), but this walking had some anomalies: I swayed when I walked, as if I had generally had "one too many drinks," and I fell over very often. Worse, I would climb up on anything (tables, chairs, sofas, etc.) and then either bravely fall headfirst to the ground or lose my balance and fall headfirst to the ground as well. My parents often thought that I had really hurt myself, maybe even worse, what did they mean by that? I rarely felt any pain from these "accidents," so why were mom and dad worried?

   

For a long time I had to wear a helmet to protect my head when I fell. Since I had it, my mom and dad were a lot calmer and let me walk around the house a little more on my own. I no longer need the helmet all the time since I finally got my orthoses.

 

I don't really like toys (when I was in the "Kindergarden" I could still use my hands, but now I can hardly use them at all), my parents gave me lots of things, but what am I supposed to do with them, my hands don't work the way I want them to.

  

I also wanted to tell you a little bit about the history of my diagnosis, I think that's what doctors call the procedure that determines what makes you so special, right? My first diagnosis was Early Childhood Autism. That was very hard for my mom and dad, but I still think they could have lived with it pretty well, at least that's what they told me. But after I lost more and more of the use of my hands and the few words I spoke, they wanted to know more and had my pediatrician take blood samples, which were then sent to a so-called "human genetic study". This was supposed to check for things like "fragile X syndrome", but the result was different: a mutation was found in a certain gene, MeCP2, and overnight I was a so-called "Rett angel" (I really like that name), but apparently it wasn't so good for mom and dad. They were really shocked, I would have liked to comfort them, but my lips couldn't utter the words I had been thinking about for a long, long time. It's a shame, isn't it?

   

What is really stupid, of course, is this epilepsy, which is extremely annoying. A "head storm" is really hard, everything twitches, gets very stiff, I often don't know where I am, it's weird, the whole thing! So now I have a so-called pulse oximeter and several cameras in my room to monitor me at night, so mom and dad can sleep more peacefully, because a very loud alarm sounds if something is wrong with me.

   

This part was constantly updated by my dad! (I dictate, he writes, cool, a personal secretary, right?)

   

All my love, and I wish all the others concerned the very best: healing, health, joy of life, the greatest inner peace and, of course, a treasure trove of friends!"