Every year in Russia, children die with spinal muscular atrophy (SMA), a terrible disease that causes muscles to stop working. Many of them could have been saved if they had been treated on time. But the state buys drugs too late or does not buy them at all.
The heroines of the film are Dasha Gaeva and her mother
Journalists from the Network of City Portals met with families who are doing their best to save their babies and are looking for 160 million rubles for a medicine unregistered in Russia. We talked with those who have already collected this colossal amount and gave the child an injection – does the drug work, will the child catch up with his peers?
And they tried to figure out why the state does not provide children with drugs for SMA, which are already registered in Russia and should be issued free of charge.
After all, while the parents are suing, hundreds of babies are waiting and slowly dying.
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Photo: Maxim Butusov / E1.RU