The baby was less than two months old when doctors made a horrible diagnosis last summer: Michael from Ludwigsburg suffers from the most severe form of spinal muscular atrophy (SMA), also known as muscle atrophy. If SMA patients like him are not treated, they usually die within the first two years of life. Nerve cells atrophy in the spinal cord, muscle strength throughout the body diminishes. The babies are getting more and more problems to move, to swallow and to breathe. "Every day a small part of him dies," Michaels family wrote in the summer on Helpmichael.de, the website she has set up. In addition, but also with the help of social media, she collected donations for treatment with "Zolgensma," a novel and promising gene therapy from the US, given with a single infusion. The product of the Swiss pharmaceutical company Novartis is considered the most expensive drug in the world and is still in Germany
This article was published for the first time in the SPIEGEL issue 47/2019.