It is almost the anniversary of our worst day in our lifes -15 February 2016. That’s the day when we lost our hope, our dreams crumbled into dust. We got the diagnosis: Inga is affected with spinal muscular atrophy (SMA) – a cruel and progressive disease. We don’t think there’s anything worse in the world […]

Inga got leg splints. Unfortunately we waited for them so long (since September) that they are not appropriate anymore. They give support only for ankles, and that is not enough. Inga bravely suffered repeated measurements and plaster casting. Now we wait for longer splints that will support weak knees and thighs. Inga speaks beautiful and […]

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 […]

It’s been already two weeks since SMA drug (Spinraza) is approved in USA. We think about that all time long. Why we don’t live in States? Why they can treat SMA there but we cannot do it here in Europe? Company Biogen explains why Spinraza is so expensive (750 000$/year): for the last 10 years […]

It’s so great that year 2016 is finally over. This has been the worst year of our lives. The year we found out that our beloved little baby girl is ill from incurable progressive disease which can stop Inga to move, that she may lose swallowing ability and eventually maybe she will need courage and […]