Did we find out everything about SMA for the last 24 weeks? For sure not. We know a lot but still not enough. We want to learn more each week. We read a lot scientific articles. We also read SMA parents forums and websites – there are many practical information out there. We check American, British and Polish websites. Each week we see new parents joining SMA forums – we know, we can imagine what are they feelings: negation, anger, loss, helplessness, breakdown, negation again, taking action will and weakness. Finally acceptance comes. The worst information on forums are about children who have lost their fight against SMA… We didn’t realize how hard it will be for us to face that. We don’t know those parents nor children but we share their sadness and grief. Mortality rate among SMA type 1 is really high… Although Inga is SMA type 2 we still afraid of the future.

Inga has got a strong feeling of independence. She run away from us while we are on playground and screams: ‘Far away, I walk so far away!’. We would give everything if is she can really run away far away in the future and we need to chase her. As for now she barks her hand and knees.

Waiting for orthosis Inga was given with knee stabilizers. We learn how to stand with them – it is not easy but Inga doesn’t give up. Once we learn we will show you!

Another huge step for SMA drug approval: http://www.curesma.org/news/important-milestone-reached.html

August is SMA Awareness Month! Help us spread awareness for SMA all month long. #SMAawarenessmonth