My name is Marjan Sipma. born 1968 and married with Jetze Sipma. We have 2 children, Jelle and Wytze.

 

Since 1996 I know that I have a congenital brain tumour named chordoom. I had 3 major operations. First time was July 1996. The second was January 2000. The last one was December 2000. The first 2 times with relatively little damage. The third time after a thorough removal of maximum amount of tumour tissue there was a complication. One month after the operation I had to sneeze. Leakage of the cerebral membrane was the consequence. The 7th of February I got meningitis thanks to this leakage. I just survived. It was on the edge. It took 6 Weeks of anti biotic to kill the bacteria.

They decided to close the hole in my cerebral membrane. During the operation (19th of March) a small damage occurred in the lower part of the brain. I ended up in a 3-week coma. During this coma the bacteria attacked again resulting in a second case of meningitis.
I woke up with locked-in syndrome meaning that communication was only possible blinking an eye.
Until the end of may 2001 I stayed in the hospital (Isalaklinieken in Zwolle). From there I moved to a special home for (ex) coma patients, ít Zonnehuis in Zuidhorn. I stayed there until August 8th. From that moment on I wheel my electric chair around in Revalidatie Friesland in Beetsterzwaag.
End of March 2002 I got home again

 

The tumor
It seems that being an embryo you have certain cells that normally stop growing after birth. In some cases these cells form the basis of a tumor. Somewhere on this earth there should be some persons having the same kind of tumor. Imagine trying to find them. Its like the famous needle in the haystack.
So Iím the lucky one having a tumor like that. The only remedy is removal. I had that kind of an operation 3 times now.