Time goes so fast… Last year in June Inga was able to walk with her walking frame or trolley. We were just waiting for her first step. We haven’t expected that that step probably will never come… Some news about SMA drugs: http://smanewstoday.com/2016/06/09/cure-sma-releases-june-2016-update-sma-drug-pipeline . We know each day more about SMA drugs and how they […]

Seventeen weeks… Seventeen hard weeks. Weeks when we were thinking almost only about Inga’s future. We wish we could forget about SMA, about her illness. Forget for at least one day…. To see her having strong legs, running across meadow and picking flowers… We wish we could see her stop, squat to pick the flower […]

Inga is over two years old now. But for us she is still our little baby. She doesn’t walk, has almost no hair, talks not much. We’ve get used to it. But suddenly Inga starts to ask to do “grown-up” things: – She wants to sit by big table, not only by her small one. […]

Lubliniec Alpine Club and Kartkazpodrozy.pl support our fight against SMA! Climbers want to climb Noshaq – Afghanistan’s highest mountain, the second highest independent peak of the Hindu Kush. They dedicate their climbing to our Inga and by doing that they want spread knowledge about SMA around the world. We hope it will help to hasten […]

Inga is not able to stand anymore…Even with a help of her „Crocodile” standing frame… We wish it is just a temporary and she will get medicines soon… We need to have a hope but it is more difficult each day… There are already some medicines which help (but not cure) with muscular diseases: http://www.smasupportuk.org.uk/clinical-care/medications-research-review […]