Inga knows she has weak legs and cannot walk. Because she is still so young and small she does not realize how her disability creats limits in her life. last week she asked when she will go skiing… Our heart has broken again. It is so difficult to tell our own child that there will be so many things she will not be able to do in her future life. And all because of SMA – so cruel disease.
But we have been looking for and found few charity skiing schools for disabled children! E.g. https://youtu.be/1IVaebDluGI . Now we know Inga will ski one day. It must happen! Maybe in a year, maybe in two years. At least for a moment! Or maybe Inga will finally get treatment and get stronger?… Although we hate cold this winter we dream of snow and our Inga skiing…

Last week there was Halloween party at school. Inga and her brother has been preparing to it very seriously. They’ve had much fun with that and enjoyed their costumes. We realize we will have to fight for Inga’s joy and happiness in the future probably quite often…