SMA takes so much from us… Sometimes we do not realize that we can’t experience few normal gestures, behaviurs. E.g. holding hands – it is so nice to hold your child’s hand, to help her to walk or run. We have just noticed we do not hold Inga’s hand very often. We hug her, kiss but not holding hand. When would we do that once she cannot walk? Few days ago grandma was pushing her buggy and accidently Inga grabbed mummy’s hand who was walking just aside. For few moments we had a feeling we walk together…We miss that so much! Now we are gonna to hold our hands more often with hope that one day we will go for a walk. Walking…

We are extremely happy there is a huge rumour in Polish media about SMA for the last few days. Maybe politicians will help our community to get SMA drug faster?