SMA changes every part of our lives. It changes the way we think about future. Once in the past we had plans for next month, year, even next few years. Now we cannot have plans because we do not know what the future will bring. We try to find at least one thing we can be sure about. But only uncertainty is certain… Fate pushed us on deep water… Will we make it? Will we negotiate difficulties? We wish Inga has at least happy childhood. We’ll do our best to achieve that.

Last week Biogen & Ionis submit Nusinersen (SMA drug) application to EMA for marketing authorisation. It will take several months to complete approval process but that little step made us feel very happy. We waiting so hard for cure to come… http://www.sma-europe.eu/news/nusinersen-application-to-ema/

After many, so many, attempts Inga finally learned how to slide a slide in seated position. We’ve never thought that such a standard children activity could be so hard to learn… Because of weak spine and leg muscles she was trying to slide laying on her back. But now sometimes she mange to slide while sitting. We are so proud of her!!!

Once again thank you for your help!!! Charity house parties, bidding, slide shows etc… You’re great. For those who wants to support Inga’s fight against SMA please visit; https://www.justgiving.com/crowdfunding/IngaFIGURSKA