So…. We have just started our 2nd year with SMA.
Last year was very difficult for us. It was a year of our fight against disease, year of lost hopes, year of fear about Inga’s future. Year of helplessness. A year of friends’ help and support. We try to do a lot to help Inga but it hasn’t change her situation much… Although it was bad year for us, in the world of SMA it was the best year ever – first SMA drug (Spinraza) has been approved in USA. Many children (only severe types of SMA) got a drug in Europe according to EAP – Early Access Programme. These are life events for our SMA community. We can only regret that Inga cannot benefit for them so far. Let’s hope Inga is going to get treatment this year. We strongly count on that.