12 February 2014
On Feb 10,
2014 our beloved Maxi died at the Franken-Hospiz
in Weinsberg near Heilbronn.
After 19 years he has finally lost his battle against the late complications of a measles infection he went through when he was a 6-month-old baby. It hurts. Very, very much. But it becomes even worse when you consider that he could still be alive had not unvaccinated children infected him with the measles virus back in 1995.
He has never
had any chance.
11 January 2014
Maxi's condition has constantly worsened over the past weeks. He is barely reacting to his environment and if even he does, he would often start crying and screaming at things that definitely could not cause any pain such as music, wind or when you just caress him.
We are at the end. We cannot get the pain under control, we dare hardly just to touch him. For us parents it means a torture and for Maxi an absolutely intolerable situation. We have therefore decided to give Maxi in the care of a small hospice not far from here. It is a beautiful house, almost like a living community, located in a residential area. We very much hope that they will find the right pain management and that he no longer has to suffer. Today is the day.
Almost nine years of caring for Maxi within his family are coming to an end. We are very sad and it breaks our hearts, but we just can go on no more. We would like to take this opportunity to thank all who have supported us over the past years and across the miles, whether in direct contact , as friends , neighbors , or only virtually. Very special thanks go to Maxi's physicians Dr. Harald Rickert and Dr. Jens Plünnecke who have been involved from the beginning and who have tried everything to influence the disease process positively, to our loving nurses who have supported us and cared for Maxi with devotion and everlasting energy, to the hockey team of the Steelers and their fans who have been very helpful especially in the first few years, and last but not least to Elvira, who has given us the courage in 2006 to not give up, who has taken us under her wings and helped us to accept fate, to rise again, and adjust to a life of care.
www.aktion-max.de remains online, but
will no longer be updated. The guest book will be closed by the end of January
2014. Our association will remain
accessible via Facebook and
will continue to fight against measles and their complications. Maybe sometime
even in this
country measles belong to the past.
Thanks again for everything.
31 December 2013
2013 is almost over. Not necessarily a good year, but one that has brought Maxi much closer to the final stage. He is very often suffering from pain. It is hard to cope with his moaning and crying not only for him but also for us, his parents. None of the pain therapies have yet shown any significant improvement. We are thinking about transferring Maxi to a hospice, at least part-time, to get the pain under control. Maybe they can help him there.
We are anxious about what
2014 might bring...
03 February 2013
There are not any major news about
Maxi. So far he is doing ok. His chewing and swallowing
capabilities have slightly improved. He seems to be a bit more aware of his environment
showing some more reaction to things happening around him.
Lately the topic of "vaccination and
childhood diseases" has apparently gained some more
attention in public. There have been various enquiries for interviews or reports on Max and
Last Thursday the internet journal
published a longer
report on Maxi's story,
very similar to the speech we held at the EU summit in Luxembourg last fall.
The German newspaper
Tagesspiegel printed a
one-page long article on
the risk of measles
and other childhood illnesses for their recent Saturday edition. We highly recommend it: it is
very well written and contains comprehensive information on the subject matter. The document
can be downloaded from our media & info page.
Since yesterday, our association
aktion-max e.V. is on facebook. We can now much better
get engaged and discuss with you over this social media channel. Check it out! We are looking
forward to your comments and opinions!
29 December 2012
It has taken us longer than originally
planned to post the next update.
The Christmas holiday
season 2012 is over .. only 2 days left and 2013 is here.
This year Maxi has not gone through any
crises before or during the
Christmas holidays time
unlike in earlier years. He is doing ok, there have been no major changes in his condition over
the past months. Maybe he has become a bit quieter. However there are only a few heavy
seizures now and then which is good...
On July 24 Max turned 18. Typically an age when the
world is open and
full of opportunities.
Here everything is different...Max has already spent almost half of his lifetime in the comatose
state of this terrible disease SSPE...and his condition is constantly worsening.
11 October 2012
days we are getting very much afraid...of what will eventually come.
Sometimes when Max is really exhausted he falls into a condition where he is even further away than normal, not reacting, barely breathing... in a different, distant world.
The pictures look bad then and let us anticipate what our family will be going through one day.
On this October afternoon however he came back after 1 hour of deep sleep...
Mid October we were invited by the
European Union to attend an international
childhood immunization in Luxembourg. We held a speech on Maxi's story and pointed out
how important it is to fight for higher vaccination rates against measles, as it is the only way to
prevent additional tragedies like Maxi's. The slides we showed can be downloaded here.
Nevertheless we are not expecting any short-term major
changes in vaccination
practices. Although many of the conference attendants seemed to be interested, it became obvious,
how very slowly the EU mills grind, how many different interests exist, and that we are actually
light-years away from a political solution. That is a real pity, since we are giving too easily away
the opportunity to eliminate measles throughout Europe forever!
So we continue our fight in our immediate, little world. For
more education on
measles and the
high potential danger of the virus, for the well-being of Maxi and his family.
Please keep supporting us...Thank you.
A happy and healthy New Year 2013 to everyone!
6 April 2012
After almost 5 months an update on Maxi is
more than overdue, especially
since there have been changes lately, unfortunately not for the better...
Maxi is increasingly experiencing
sincere difficulties in swallowing which
sometimes makes feeding him really drawn-out and difficult for everybody.
He is more and more choking on normal food. Most of the times he would
be chewing without moving his tongue, so the food simply remains in his
mouth without being reduced to small pieces.
As a consequence, Max has lost a
significant amount of weight. As of March
we have started feeding him high-calorie nutrition (similar to space food)
through his stomach tube. Fortunately he has gained a few pounds by now.
6 April 2012
In general, Maxi's activity
has continued to significantly weaken. Often he would sit, sunken
into his wheel chair, silent, without notifying what is going on around
Sometimes though he would react strongly when someone caress him, when there are familiar voices... now and then he would even laugh or at least smile.
passed the winter without any illness. He did not even catch a
cold. How fortunate!
By the way, Maxi now has his own
facebook page. Check it out!
13 Nov 11
On Nov 12 we were invited to Frank Elstner's TV Show "Menschen
It was about Maxi's sad story and how
we generally go about childhood diseases
and vaccination. The clip was broadcasted on Saturday, 10.10 pm CET on Ger-
man TV channel SWR. Video recordings can be found here.
On November 1st, one of the main German TV channels, ZDF, visited us and
filmed a report about Max. It was screened today on the TV program WiSo.
You can watch or download the link to the report here.
21 Oct 2011
A couple of days ago, Natalie, a 13-year old girl who fell ill with SSPE some
years after Max, died. She had to go before her life even really began. She had
fought for three and a half years, and like all the others so far... lost the battle
in the end.
Our deepest thoughts are with her parents Anka und Günter, and of course her
little brother Dennis who didn’t even get to know his big sister properly.
We wish all three of them lots of strength and solidarity in these difficult times,
even though nothing will be the same as before. We too will one day reach this
point, and we fear this moment...
There is currently a lot of reporting in German media on vaccination and measles.
Please check out the links at media & info.
It’s been quite a while since we told you on Max’s website how he is doing.
Many dear readers, and we hope that there will be some new readers too, are
following his fate, which could have all been avoided so easily.
Next month it will be seven years since Max stepped into a different world. He
had no choice though... he was too young to be given the vaccination that could
have prevented him from this horrible disease.
Now back to Max: his condition hasn’t really changed very much. There are times
where he is pretty much okay and where he reacts to outside influences.
At times like this we really think that he does take in a lot and recognizes some
things from the past, such as his grandma, to whose voice he reacted with hearty
laughter when she visited us after a long time.
August 20, 2011
really enjoyed this year's warm and long summer.
The new pool in our garden was good for him, even though he needed almost 30 degrees centigrade warm water in order not to freeze. .
It is hard to lift him into the pool, and it takes at least two people to get him in and out.
However, once he is in the water he becomes light as a feather, and with his life-jacket we don’t need to worry about him slipping over and his head going under water.
However, there is another side of the story... there are also times when he
eats, just sleeps all the time and hardly reacts. After a long time we had to start
feeding him through a tube again. This is when our fear returns, about whether
this is the beginning of the end. Up to now he has always recovered and so far
the feared next unavoidable step downwards hasn’t happened.
The worst thing is that his epileptic seizures have returned, which happen all
the time during the day. There are also huge, strong fits when Max’s body seems
to be remote controlled. His face twitches in all directions, he goes white, his lips
turn blue and he just doesn’t breathe. These moments are so cruel and it feels as
if time stands still, especially at night.
Luckily Max usually recovers on his own, and we only had to administer the
emergency medicine a few times, which so far has always helped. Yet our fear
and worries that one day the medicine just won’t work anymore are always there
and remain permanent features in our lives.
25 Dec 2009
Yesterday was Christmas Eve. It’s now the fifth time that we celebrate Christmas with
our very ill boy. When it all began in the winter of 2004/5, we had no idea really what
was coming for him and to us as a family in the years that followed. Perhaps just as well...
They were terrible years, above all 2005 und 2006, when it became obvious that the crash
was unstoppable, and Maxi would turn from lively, bright boy into a waking coma patient.
He is still like that today, even if his body has continued developing completely normally,
not influenced by the illness at all. Maxi is on the way to becoming a man. Meanwhile,
he is as tall as his mom and weighs more than 50 kg. That makes it more difficult to look
after him, but thanks to our excellent nurses and with our new house’s suitable-for-special-needs design it’s easier to manage.
of health has changed little in the last few months. There are days when he
is totally awake, fit and also reacts every so often to what is going on around him. Then
there are days again in which he is really tired and drowsy and shows almost no reaction.
Unfortunately there are still days with very many epileptic seizures.
Included in these
seizures are times where he simply stops breathing. It just happens for no reason and
without prior warning. Then it’s terrible seeing his face going blue and you can only hope
that he suddenly takes in enough air and starts breathing again.
His love of
food has not changed much. Sausages are still the best! Going for walks,
listening to stories, swimming at school…these are all things that he likes to do.
But what he likes best is
if there’s lots going on: loud music, children running around
near him, singing, laughing, dancing…most of the time he smiles too.
He also enjoys a good cuddle. Just
like when he was still healthy. Maybe even a little more
of his old self will come back and he’ll recognize where he is and where he belongs.
19 July 09
Many weeks and months have gone by again and we still haven’t had time to update the
website, so we’d like to give you a proper update now, a week before Maxi’s 15th
birthday on July 25.
11 Jan 2009
During the long and cold winter months his condition has been relatively stable with only a few severe seizures. Most of the times his breathing was not affected.
He still enjoys being outside for long walks. He shows significant reaction to voices and sounds, wind and sunlight.
However, when there is
too much of it, he clearly signals this by raising his voice in a "claim".
Max is still going to school at Markgröningen, accompanied by a nurse.
likes it there, at least it seems so. There is a lot of variety and also a
lot of therapy,
which does him good. He enjoys the swimming lessons most of all. You always notice the
difference, compared to the school holidays, when you can not do much at home, simply
because you do not have the resources.
very important to him, just as it used to be. He reacts to music or other
loud actions and it looks as if he likes the things going on around him.
As we reported
in an earlier blog, at the end of February 2009 there was another SSPE
seminar in Istanbul, Turkey. An intensive exchange on the subject of SSPE took place between
doctors, scientists and parents at what was clearly a bigger and scientifically more ambitious
seminar than the one in September 2007.
sessions were very interesting and also a couple of new points were raised,
the summing up was rather sobering however: there is currently no cure for SSPE, at the
very best a prolonging of the inevitable, in individual cases over many years too...:-((
We will post
the presentations and documents online as soon as we get permission granted
(this hasn’t happened yet).
beginning of June Maxi´s condition started to deteriorate: he started having
seizures again, unfortunately again where he stopped breathing. As ever, they were unexpected
and came out of nowhere. It was actually when we were often having humid weather, and with
epileptics one knows that thunder in the air also creates “thunder” in the head.
This now meant as well: change the medication.
This is unfortunately not very easy with Max, as he reacts very sensitively to change amongst other things.
Maxi in March 2009
often really exhausted during the day and sometimes sleeps
very deeply. Not nice,
but a necessary evil. Maybe he’ll get used to it over the course of the next few weeks and the
tiredness will go back to a normal level again.
all hope for nice weather so that we can celebrate Maxi´s 15th
birthday with lots of
Nürnberger sausages (which he loves to eat).
On July 4th Stuttgarter Nachrichten newspaper printed a story about patients in a waking
coma. The editor visited us at home in order to get a personal profile of Max, the illness
and "Life in a Waking Coma".
You can read the report here.
22 Nov 2008
It has been almost five months now since we last wrote anything about Max. Apologies to all who
frequently check this site to find out about Max. We hope you understand that so many things
have happened recently and we, as a family, have had hardly any time to maintain this website.
We will do so now, and hope we’ll be able to update this page on a more regular basis!
September 6, 2008
Maxi is doing pretty well!
Since he has been growing and putting
on weight over the past months we have been looking for a way that we will be able to care for him here at our home in the future.
We were lucky: it took quite
a long time, but finally we found a site where we could create
everything important we thought would be necessary for Max, for us as a family and our future
together: as much space on one level as possible, no steep stairs or narrow corridors, without
barriers and so on. We found a lovely and quiet piece of earth on the borders of Sersheim, sur-
rounded by nature.
Maxi's new room (Oct. 2008)
Max now has a huge room with a direct entrance to his bathroom.
There’s a hoist on the ceiling with which he can be lifted from his bed and “driven” into his bathroom. This really helps with the whole caring and nursing situation.The house also has really wide doors and enough space in the living area to get everywhere with the wheelchair.
His favorite thing is action: let it be loud music or just “wild” actions... just like our old Max.
And, just as it always has been, he hates being on his own. The best thing for him is being cuddled, body contact seems to be really important to him.
He strongly reacts to touch. When we tickle or massage him he laughs loudly and strongly, a little like he used to in former times.
Maxi in his "beanbag"
Maxi is doing all right
For quite a while now he has been showing us clearly what he wants and what he does not like.
Sometimes his "little stubborn head" can be noticed. He really likes us having a barbecue. Last time he managed to eat eight Nurem- berg sausages and he was laughing a lot.
His left part of his body seems to come to life more and more. He has his left arm next to him or on top of his stomach pretty often, and sometimes both his hands are “playing“ with each other.
Oswal from India is really satisfied with Maxi’s condition, as far as
he can tell from the photos.
He has confirmed that the EEC has improved during the past months. He might come to visit us
again this summer. We would be very happy if he did.
|The evening before his departure, however,
Alexandre came to visit Max to say good- bye.
On one hand it was rather sad, on the other hand, Alexandre was really positively surprised to see how much better Max is now than he was during his last visit in the summer of 2007.
We were really happy about this, as we do not notice changes over time so easily because we see Max every day.
Max and his Steelers idol
Max and his tomcat Leo
Max has the most fun
when his big brother comes to him. Julian only needs to say one word
and he already starts laughing.
Maxi’s cat Leo likes being near him again too.
At night he creeps into his bed calmly and quietly and purrs really loudly.
It has taken us a while to
find the time to update Maxi’s website. A lot has happened since the
beginning of the year. Many things seem to be very positive:
Maxi's sitting up is getting better and better. It works best on a hard floor, but he also manages to keep his balance on the sofa or when we have him sitting on our lap and he keeps his position when you gently push him.
A couple of days ago he started to turn over from his back to his side and sometimes even to his stomach, all by himself (!). So far it’s only working in one direction because his right leg is still much more active than his left one. But his left leg is becoming more and more animated too. When we tickle his feet he pulls his legs up. Both of them!
Maxi on his new
|Maxi's condition has been
almost stable for several weeks now, so we spontaneously decided to
chance an experiment with him: take
him with us to the ice arena to one of the games of his beloved Steelers. We could not wait to see how he would
More than 1½ years after his near-fatal breakdown the time came: on 28 October 2007, the Steelers played a match against Kassel and Maxi was there!
You can find out more about this great evening here
(in German only, sorry).
Maxi and his brother Julian in Nov 2007
The strange thing is the way he holds his head. Something has changed, and again we do not know in which direction: when Max is sitting in his wheelchair his head often bends heavily down to one side, as if he had cerebral palsy.
However, when we sit him on the sofa or on a chair and fixate his shoulders, he keeps his head up straight, as if everything was okay. What is going on there?
Even though his brain is not quite functioning properly yet: Max is doing very well and we are all
very, very happy about that.
We will continue fighting, all together!
On our arrival our
lovely nurse immediately cares for Max. He did not
drink much on the journey, and we did not have a proper lunch while
The next couple of days are spent on the beach. Max is allowed to sail on the sea in a small dinghy. He really enjoys it. He manages to keep his head straight while swaying on the waves.
Diano Marina beach
In the evenings, when
we all sit outside in the courtyard and the other kids run and cycle
around, Maxi seems to be very happy.
He laughs a lot.
He also loves being wheeled across the market and around town with all its temperamental Italians.
On the patio we all
sit around the birthday table, Max in his wheelchair right in the
The children sing "Happy Birthday" and Maxi’s eyes widen. We get the impression that he is listening and enjoying it. It is a lovely and relaxed party.
We talk and laugh, the sun is shining and the cake disappears in seconds. And Maxi is in the middle of all of it. He is well.
|He reacts positively to sunlight, to warmth, wind and all the sounds of nature outside. He appears to really enjoy the sound of blackbirds singing at sunset, a broad grin appears on his sun-tanned face. His eyes seem to fix on something again for a brief moment. Of course we cannot know if this is really the case.|