There is no
therapy for SSPE. It is
generally fatal. There have been very rare cases of spontaneous
have not, up
until now, been proved scientifically, where the children recover,
different ways. There have even been reports about spontaneous
be found via the Internet. They are real, Max’ family personally knows
these cases: Samuel from Vienna, Austria, who is currently eleven years
who seems to have survived or at least temporarily overcome SSPE.
is no medical explanation for that.
is that SSPE is relatively rare, the number of unreported cases is
There are even countries where SSPE is being declared as non-existent
in other countries - Japan, Turkey and India for example - a
of cases are known. In Germany as well, the number of SSPE cases is
to the increasing number of measles epidemics. Fifteen cases of SSPE in
children are registered at present.
However, there is hardly any research,
the development of a special medicine does not appear profitable
enough. There have
been attempts with Interferon, combined with an anti-viral drug
However, this is just intended to extend life but not to be a cure.
where there are supposedly several hundred cases of SSPE in children,
have founded an SSPE committee which
intensively researches possible
treatment. Results so far look hopeful: a combined therapy of immune
doses of vitamins, change in nutrition and other measurements clearly
good results. However, all of this has not yet been proved.
and India are
researching the subject too, but it still seems to be a long way until
when there might be an effective drug.
from all over the world
It is a
blessing that angels exist everywhere: people who help, who
support us and just want to help because they are driven by their trust
and good things: just like Nilgün, our dear friend from
has spent day and night on the Internet researching to find help for
Our pediatrician Dr. Harald Rickert from Besigheim and Dr. Jens
Plünnecke, senior physician at the Ludwigsburg
Klinikum, who have both known
Max all along since the days when our boy was still healthy. They have
accompanied us through the darkest hours during the past months, day
and night. Dr.
from Pune, India, who has dedicated his professional life as a doctor
who were born with or have acquired cerebral damages. He has built a clinic
and has promised Max and his family lifelong support. Mohan K.
Bangalore, India, who made it possible that we
can get medicine from the other side of the planet. And last, but not
least, our dear nurses from the mobile children's nursing MOKI who are supporting us many hours per week to
secure the 24-hour monitoring and medical care
These people are
heroes amongst us. We do not know
where we would be today without them. We are infinetely grateful for
all they have done for us and our boy.
Upon the sudden increase of SSPE cases in Turkey, a committee was
formed in 2005 by the Health Ministry. The task of this committee is to
work on further reaearch in the field of SSPE and to potentially come
up with more promising therapies for curing SSPE. The committee
consists of renowned pediatric neurologists from the universities of
It is governed by Prof.Dr.Banu Anlar.
Hacettepe University Tıp
Çocuk Enfeksiyon A.D.
Gazi University Tıp
Fakültesi Çocuk Sağlığı ve
Prof.Dr.Firdevs Aktaş Gazi University
Enf.Hast.ve Klinik Mikr.A.D
Sağlığı Enstitüsü İstanbul
Fakültesi Halk Sağlığı A.D.
The medical care and treatment of Maxi has undergone
numerous changes since his breakdown in March 2006, as it needed to be
continuously adapted to the course of the illness. Supported by our
German doctors we have included findings in the treatment of SSPE
gained from abroad, specifially Turkey, where hundreds of SSPE cases
exist. We believe that this helped alot to achieve unexpectedly
positive changes in Maxi's condition.
Maxi's parents and friends have spent weeks and months to
gather these bits and pieces of information, as the common knowledge on
SSPE and its treatment turned out to be rather limited, at least in
Therefore we encourage all
affected families who are seeking additional support in this
difficult situation to contact us for further information and
experience exchange. Please send an email to firstname.lastname@example.org.