Inga has visited pulmonologist this week. SMA affects breathing muscles as well. But so far Inga has strong chest muscles and there is no need to support her breathing. Although her chest shape has changed recently – it collapsed a little bit… So far it is not dangerous. We wish so badly SMA wouldn’t be progressive disease…

French Government have just agreed to fund Spinraza in Type 1 AND 2 right from EC approval for residents of France.
http://ansm.sante.fr/…/NUSINERSEN-2-4-nbsp-mg-ml-solution-i…

We wish same actions would be taken in other EU countries… Meanwhile if anyone has some friends or relatives living in France please give us a sign. We have some questions and maybe they could help us. Thx in advance!

Allez les Bleus!