As I have my own experience with SMA type 1 through our first born daughter Ingrid, I will do whatever I can to support you as a parent. I offer you free support via Skype, phone or in-person if you happen to live in Zurich, Switzerland.
Although we had excellent medical care and support for our daughter (probably the best in the world), we were pretty much left to fend for ourselves as parents and couple in grief. There was no support group or anything else available and I felt so utterly lonely and confused after we were given the diagnosis.

I just want you to know that you are not alone, and you don’t have to go through it alone. I’m here to listen and hold your hand, so please don’t hesitate to contact me. You are in my thoughts.

Lots of love, Karin