This article starts with a story about a child who was diagnosed with spinal muscular atrophy with respiratory distress (SMARD) and follows the idea that there is no a single country where the health care system would be able to respond the needs of 100% of patients. Today the SMARD diagnosed in about 80 patients in the world and there is a hope that the experimental therapy will become cheaper in the foreseeable future due to more advanced technologies and due to more studies.
The story of the boy from the article is impressed me. At the age of 12, he is popularizing information about SMARD and he even was one of the guest speakers at the event dedicated to the Rare Disease Day, which was held in Connecticut. “A Disease May Be Rare, Hope Should Never Be”.