I am a close friend to Anastasia and Vladimir's family. They live in Russia and have three beautiful daughters : Elina, Mila and Sofia.
Sofia has just turned 4 months and two weeks ago she was diagnosed with SMA 1 level : Spinal muscle atrophy,which is a rare, severe and rapidly progressing genetic disease. As for now there is only one pharmacy product in the world, which can save Sofia's life and it is called "ZOLGENSMA" - is a swiss product. The injection is administered intravenously once in a lifetime and it acts at the gene level by replacing the mutating gene with a functionally one and if it is done before the kid turns 6 months old then the child can have a normal life. This injection is the most expensive pharmacy product in the world and costs $2.125 mln. How dreadful is to realize that you cannot save your child because you do not have enough money for treatment. The family is doing everything they can. They do a lot of supporting therapy and in the meantime try to raise a necessary amount. Each of us can help and give Sofia a chance! A little help by everyone and reposting our message in your social network will make a difference! Please come and check Sofia's story on instagram! https://www.instagram.com/helpsofiadarbinyan/
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