» About Max

That's me.

I was born in Berlin-Wilmersdorf, Germany, on 25 July 1994. It was very hot in the big city. My parents, Anke and Rüdiger, lived together with my big brother Julian, who is almost two and a half years older than me, in a big old house made up of flats from the 1890s in Berlin’s Moabit. There were lots of children there and there was a wonderful inner yard in which we could play, run about and laugh. I was always down there, in my pram, when Mum or Dad sat down there with their friends and neighbours until late at night, talking about almost everything.
Then it got colder and the days became shorter. In December 1994, the first snow began to fall in the city. I fell ill, got the measles, only a little bit, nothing dramatic. Soon I felt better, and when my mum celebrated her 30th birthday I was fighting fit again.

I was always full of mischief, full of energy and there was one thing I was particularly good at: screaming, sometimes for hours without end. 

In April 1995, Mum, Dad, Julian and I took a flight to lovely warm Florida for a holiday. It was so beautiful there,  I gave up screaming and learned how to stand up really quickly. Back in Berlin, a new great summer came. I learned how to walk, talk and chased about with my brother. In autumn 1995, Julian joined a private nursery. It was a privately organised kindergarden in Berlin where the parents can get really involved. A great idea, as there were not enough spaces in public kindergardens in those days.

Winter 1995/1996 was tough. It was icy-cold and the air was really polluted. Sometimes you couldn’t see the other end of the house for all the foggy air. Julian brought home one cold after the other from the nursery and infected me too most of the time. That was the reason why my mum could not get me vaccinated, even though it would have been the time to do it.

And so I fell ill again, and pretty severely, in January 1996. It was the measles again, but this time much, much worse than before. My temperature rose above 40 degrees centigrade and I felt really ill. The doctor said I was at a critical stage. Mum and Dad were afraid that I was going to die. The measles must have been highly infectious as Julian fell ill with them a couple of days later. However, as usual, I fought back and became healthy once again.

In the spring of 1996, we moved to Hechingen in Baden-Württemberg. It was so beautiful there: we had the Hohenzollern Castle close by, a lovely new house and great neighbours, Susi and Walter. They even made up a song for me: "Wild, wild, wild Maxi lives just next door..."
Unfortunately, we had to move house again soon, because my Dad started a new job in Munich in spring 1997. We moved to Wartenberg in Upper Bavaria. In autumn 1997, I joined a kindergarden there. It was a great one, with lots of wooden stuff and space to play. By then I could do what a proper three year old kid can do: ride a bike, ice-skate, run, climb and jump. I loved being on stage and performing, especially when everybody was clapping their hands.

In the middle of 1999 we moved house again, but this time we stayed longer. We moved to Sachsenheim, near Ludwigsburg. We had a huge house on an estate which had lots of other children living on it. At first I joined a kindergarden called "Rainbow" in Goethestraße, just a few yards from home. Then in September 2000 the big day arrived: I was finally allowed to go to school. It did not take me long before I knew lots of children, and when I came home from school my first question always was: “Mum, can I meet my friends today?”

However, the best thing about Sachsenheim was its public outdoor swimming pool. During the summer I spent every single day there. The kids’ days in July were especially cool: from morning ‘til evening out and about – and then off to the swimming pool. I kept on practising the backwards somersault off the 3 metre board.

In the winter, Julian, Dad and I often went to the Black Forest to go skiing. It wasn’t too far from our home, and in Bietigheim, just around the corner, they had an ice-rink. Julian was already good at ice-skating, and I wanted to learn too.

We also had two cats, Leo und Lilli. Leo used to play on the big lawn in front of our house. And whenever I felt sad or I didn’t feel well, Leo would come and lay down with me. It was obvious to me that I would become a vet when I grew up.

One day, Claudia of Uli’s Igloo down at the ice-rink asked us whether we would like to play ice hockey because we were so good at skating. Julian and I thought it was a really cool idea, and Mum liked the idea, too. And even though Dad wasn’t so keen to start with because the gear is rather expensive, we both started training in the youth team of the “Steelers” in the winter of 2003/2004.

It was very exhausting a lot of the time, especially when we had to get up really early to play a match somewhere, but we loved it. And then there were the “Steelers”. They showed us how it could be if you were really good. My favourite player was definitely Alexandre Jacques, the new Steelers’ stormer. Whenever I could, I was there when the Steelers played at home, because they needed my full support. Even better than standing with my parents was standing in the fan corner. That was where all the action was. And when I couldn’t be there (if the match started too late at night), my mum sent me the scores via text message on the mobile phone.

Then in November 2004, something weird happened; all of a sudden I couldn’t remember what had just happened. Dad and Julian were really alarmed and said that I just started talking nonsense and then suddenly stopped talking at all. I had no idea what they were talking about. But it kept happening again and again, and my parents took me to the hospital in Ludwigsburg. There I was examined, they put me in this tube, connected cables to my head and lots of other stuff. I was told I had epilepsy, something kids of my age sometimes develop and then get rid of again apparently.

However, the “emergency stops”, as I began to call them, did not get any better but came even more frequently. Time and again I fell down and I wouldn’t know what had happened, all I could see was that my parents were very alarmed. I became scared and angry at the same time because I didn’t understand what was happening and my parents couldn’t explain it to me either. In May 2005, during the Whitsun holidays, Mum and Dad took me to the epilepsy centre in Kehl-Kork. There they should be able to help me to concentrate better at school and to make the “emergency stops” go away. I spent only a couple of days there before they took me to the university clinic in Heidelberg. I had to stay there for two weeks. Grandma and Grandpa came and visited me, and Mum and Dad always looked very sad. I felt that something was wrong.

Back home Dad explained to me that I had to fight really hard now because there was something in my head which we all had to fight off.

Some children started acting strangely, and some of them even didn’t want to come to my 11th birthday party any more. They never told me why. Leif has always stood by me, so have Sophie and Salka who I always loved so much, and, naturally, Julian. Eva, our dear neighbour, often came to play with me and cooked my favourite dinner for me. And of course there was Mrs Bauer, my former teacher. She always wanted to know how I was and my parents often talked to her.

Eventually it was strange at the pool too, nobody wanted to do anything with me anymore. Even though I was so good at the backwards somersault off the 3 metre board…
I couldn’t really write any more and I couldn’t do maths either. I could play Uno and chess, that was all I could still do and I was the best at them. On 4th September I even came fourth at a chess tournament with more than 30 other kids.

In the middle of September, school started again and I returned to 5th grade. But I could never remember my homework, at school everything was so fast-paced, and I was always tired. Then my parents started to talk about me going to a different school, one where it was less of a strain for me.

However, before that, during the autumn holidays in 2005, we went back to our beloved Florida once more. To the white beach, the great house with the pool, into the sun. It was nice but somehow different to all the years previously. I started seeing things that my Dad said they were not there. And then I was so tired again. And sometimes, more and more often, I was forgetting things…

In November we were back home. I went to a different school, in Markgröningen. The children there were different, but very lovely. And they always cheered up when I arrived in the morning. But I kept falling over, hurting myself badly. Mum suggested I should wear my cool “Steelers” crash helmet, then it wouldn’t hurt so much.

We spent Christmas 2005 with Didi and Anne, our friends in Denmark, who I have known my whole life. Friends for life, as Mum and Dad say. New Year’s Eve 2005/2006 I stayed up until after midnight and threw some bangers myself. But then my hat went missing and I couldn’t remember where I had left it…

Early in 2006 Mum and Dad kept talking about Samuel, this boy in Vienna. He apparently suffered from the same disease as me. And he felt really good again!
Dad wanted to drive down there to meed Sami and his family, which we did, even though I was always so tired. We went to Austria several times because there was this doctor there who had helped Sami so much.

In March 2006, my entire family fell ill. We all had a very bad sore throat and the doctor said something about a streptococal infection. I came down with a fever and didn’t feel very well. I had trouble walking and didn’t really understand what the others where saying any more.

Then somehow everything went blurry and I couldn’t remember anything at all any more…

Since April 2006 Max has been laying in a kind of waking coma, also called a stupor, triggered by an acute encephalitic boost initiated by his SSPE illness, paired with a severe streptococal infection. He can’t walk, sit up or speak. Within a few days the disease has taken everything that he has acquired during the eleven years of his life away from him. The doctors say he has no chance of recovery. However, we, as his loving family, don’t give up hope. Miracles can happen at any time, and... who can tell what is about to come?