a multinational pharmaceutical company novato sas and hopes that it will use a worldwide lottery to supply the world's most expensive drug to children suffer right suffering from a devastating genetic disease but only 100 children who suffer from spinal muscular atrophy will receive the free treatment which usually costs millions the lottery on the drugs astronomical prices triggered an ethical debate. michael story sounds like a modern fairy tale but it also poses questions he was born with spinal muscular atrophy a life threatening neuromuscular disease when his condition deteriorated despite treatment his family launched an online fundraising campaign that aim for him to receive a gene therapy that's not licensed in europe the activity that he could. yeah the treatment cost almost 2000000 euros professional athletes and celebrities lead their support bowing to pressure from the public the health insurance company agreed to pay michael received the most expensive therapy in the world. that. grew thinner and as it was a miracle that it worked at all then on the 3rd day we had another mira