» About Max
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
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
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
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
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,
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
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
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?