IT project manager responsible for E-Collaboration at a large Swiss utilities company. In my former life I earned a M.Sc. degree in physics and also finished an M.B.A.
About my family:
Father of four kids, three boys and one girl. Jannik (2001 DMD), David (2003), Jonas (2005 DMD) and Lena (2007)
Name(s) of child(ren)/individual(s) with Duchenne:
Jannik, Jonas
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
BE
Comment Wall (8 comments)
You need to be a member of PPMD Community to add comments!
Thank you so much for all the information. I'm happy to hear about the medical services there. I've never heard much before. Very reassuring. Not sure when we'll find anything out about a move. The wait is definitely nerve-racking.
I'm an American currently living in the UK. My husbands company has approached him about a job in Zurich. Was wondering if you could tell me a bit about medical care for Duchenne boys in Switzerland. Thank you for your help.
i know what you mean about trying to keep things "normal". Our 7 year old has started deflazacourt just recently and has night braces. our youngest does not have any symptoms yet. 2008 was a tough year, we got both diagnosis as well as mine as a carrier. We are living day by day, hoping and praying that somehow we will save our sons.
The stairs have been the most difficult for the oldest.
Thankfully we just bought a bungalow on a huge acre lot about 25 minutes out of the city, where the boys won't have to climb one more stair in their home. It Makes me trully happy.
You will find many families here like you and me...living and loving everyday with their kids. your in a good place.
take care for now.
Comment Wall (8 comments)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
il faut encourager smtc1100 en phase 2 euzotromid du prof Davies d'Oxford
plus VITE les essais aux USA
rien n'avance, du surplace
alors que le temps passe
toujours de nouvelles avancées, intéressant pour les chercheurs et professeur
triste pour les madades
deweer j
Thank you so much for all the information. I'm happy to hear about the medical services there. I've never heard much before. Very reassuring. Not sure when we'll find anything out about a move. The wait is definitely nerve-racking.
Laurie
Hello,
I'm an American currently living in the UK. My husbands company has approached him about a job in Zurich. Was wondering if you could tell me a bit about medical care for Duchenne boys in Switzerland. Thank you for your help.
LaurieTake care,
The stairs have been the most difficult for the oldest.
Thankfully we just bought a bungalow on a huge acre lot about 25 minutes out of the city, where the boys won't have to climb one more stair in their home. It Makes me trully happy.
You will find many families here like you and me...living and loving everyday with their kids. your in a good place.
take care for now.
Welcome to PPMD. I too have two boys with DMD. You will find plenty of support here. How are the boys doing?