12 weeks with SMA… It is still hard to believe In it. It’s hard to accept it. We do know a lot about SMA now but still need to learn a lot as well. We wish we wouldn’t have to…

May in Wroclaw is really beautiful this year. Weather is like in the middle of the summer. We’d like to spend whole day outside but… physiotherapy… exercises… massages… visiting doctors…
Anyway – everyday we try to go outside for a “walk”. Inga, as any other two-year-old, would like to be and play on playground. We take her there. But it is very difficult for us. We need to carry Inga everywhere, hold her, support her, be everywhere with her because she is not able to play safely by herself. But other people’s look and how they react are the worst…

Example:
– Woman: Why are you holding your daughter all the time – let her walk and run!
– Mum: She cannot walk…
– Woman: It’s because you hold her all time long!

It is great we have our website and facebook page where we can explain what does it mean to have SMA child. We thank all who support us – virtually and in real! Thank You!

Last week Avexis company reported data about their SMA drug they working on. It’s amazing – the virus areola carry undamaged gene and implement it to human DNA. It will take some time to approve that drug but it’s great scientist working on it. There is a HOPE…