A short introduction of me and my family

Who am I ?

My name is Alois Wegerer and I´m an austrian anaesthesist and father of three kids, two of them suffer from tuberous sclerosis.


Therefore I know both sides: that of a medical doctor and that of a concerned father.
  
I started with  blog in german - which is my mother tongue - to inform concerned parents about things we were not told when TSC was diagnosed in our daughter.  The austrian health system  supports a lot, but doctors and parents often don´t know where to get the right therapeuts for the special needs of the children. I can not offer you this information for your country.


But what I can do (and will do) is publishing some case reports about tuberous sclerosis - things that happened to us or other patients. I don´t want to blame any doctor or hospital, I just want my fellow doctors to read them and think about what still happens but could´ve been avoided, so that such mistakes are not made any more.
  
Second, I want to encourage parents who have kids with special needs to enjoy  a holiday or a trip out of their home town  with some pictures and stories about our trips.
   
I have to apologize for mistakes I make writing in English. I´ve learned it at school, and I have to read a lot of medical literature in english, of course. But reading and understanding a foreign language and writing it are two different things, though. Tell me about my mistakes, and I will correct them.
   
But now some notes about the most important people in my life:
     


First of all, there´s my wife Erika. Her profession in the health system helps us a lot .

   

    
Then there´s our first son, Raphael.

  

He´s eight years old, und things he likes most are playing with Lego, training some Karate and playing with his friends (they´re chasing "robbers" and "thieves" or spy out whatever can be spied out).
   
Sophia is our sunshine,

   

though she sufferes most from TSC. She is 5,5 years old and has therapy-resistant epileptic seizures and a severe developmental disorder: she can´t talk, rarely plays with anything, doesn´t eat or drink (so she has a feeding tube since 2/17) and has little motoric skills.
  
  
Last, but not least, there´s Philipp.

He, too, suffers from TSC. Epileptic seizure started when he was 6,5 months old. His advantage was that he was second, so we already knew how to react and how the get the right therapy for him.