This January it has been 2 years since we rehabilitate Inga. Every day several times we do a variety of complex exercises. At first we were told that rehabilitation will last from 3 to 6 months. We thought it was an awfully long time. We couldn’t wait to go. Normally after six months of intensive physiotherapy problems with asymmetry and motor delays are gone. Unfortunately for us, it was different. We increased the frequency of exercise. We practiced 5 times a day. We extended exercise time. We blamed ourselves that we do our exercises in a wrong way. We even undermined authority of Inga’s physiotherapists. We thought that there is no possibility rehabilitation do not bring improvement. But it didn’t any… We didn’t know at that time how seriously Inga is ill. Diagnosed or not – spinal muscular atrophy (SMA) doesn’t offer any improvement. Even so we did exercise on. Even though you can’t expect any improvement, progression of disease can be only slowed. That’s why we still exercise. After two years of doing physiotherapy Inga’s mother hands need rehabilitation as well… 🙁

In The United States first commercial patient received Spinraza – SMA drug: (http://www.curesma.org/news/updated-sma-drug-pipeline.html).
We are so jealous! We still have hope that in Europe, the price of Spinraza will be lower, but first we have to wait for the official acceptance. Waiting, waiting… We are counting weeks since diagnosis. Hopefully in the end we start to count the weeks since the beginning of treatment. Anything we don’t want more than that…

If you want to help please donate our fight against SMA: https://www.justgiving.com/crowdfunding/Inga-FIGURKA

Thank you!!! Without you we couldn’t have done it…