The history of the crumbs of Sophia with disease that the children stop eating and breathing. It will save a shot for 145 million roubles

Anastasia and Vladimir Darbinian 23 February had a third daughter, Sophia. About a month and a half they noticed that the girl was a little less moving, and went to the doctor. After studies confirmed the diagnosis of “spinal muscular atrophy” (SMA). More recently, children with this rare disease have died, because over time lost the ability to walk, eat or even breathe. But now families with such children have a chance — there are three drug. One of them is $ 2.1 million (145 million) for one shot, but it is done once in a lifetime. However, you have to put it as early as possible, preferably before six months. Medical columnist Maria Tishchenko learned from the family as they learned about the diagnosis, how are you going to fight and why is it so difficult to achieve a free treatment.