The New Times begins a new project: once every two weeks we will tell stories about children, patients of the first charitable children's hospice “House with a lighthouse”, who need your help In Vasya Ilkov, spinal muscle amyotrophy (SMA) is a genetic disease in which the child gradually atrophy. Vasya never crawled, did not go and did not run, he spends his whole life in a wheelchair. He understands everything perfectly about his illness and about what awaits him further.