This week we have celebrated Rare Diseases Day. We didn’t know that there are over 7 thousands types of rare diseases, mainly with genetic background. Worldwide 350 million people suffer from these diseases. It’s hard for us to imagine that – so many suffer and pain… SMA has stopped to be rare disease for us then… Personally we know at least 10 families with SMA although this condition happens only once every 10 000 births. SMA Families Community is extremely helpful. We owe them an enormous amount of knowledge, equipment and support. These are the greatest people we never wanted to meet, but have been connected with them by our children disease. We keep in mind the words of our great physiotherapist from February 2016 that we “should be happy that we have finally a diagnosis and that is the SMA (not any other severe genetic disease)”. After diagnosis they were words we didn’t want to hear, because everyone wants to have a healthy baby. But among the 7 thousand other rare diseases, SMA is very well described and known by scientists. From having treatment we are separated only by procedures and money – the medicine is already approved (so far in USA).

This week, thanks to our wonderful friends and family, Inga was present in the media. Main evening polish TV News: http://fakty.tvn24.pl/…/jest-lek-i-nadzieja-dla-chorych-na-…
Newspaper from Slupsk described our whole story http://plus.gp24.pl/w…/a/pomoz-indze-stanac-na-nogi,11846575

While suffering from SMA it is very important to eat properly. Diet can’t be too sweet and fat because weak muscles would not lift overweight body. We watch very carefully Inga’s diet and we’re so happy seeing Inga eating her favourite sour cucumber soup with such a great attention and joy.