ALS is a rare pathology; the causes are unknown and there is no cure. Amyotrophic Lateral Sclerosis is a degenerative illness of the nervous system which is very difficult to diagnose: it is impossible to establish precisely how many people are afflicted in the world. In Italy there are between 3500 and 6000 patients. This disease completely paralyzes the body, sparing only the eyes used to communicate and the brain which maintains its functions 100%. The majority of ALS cases become dramatic not only for the patients afflicted but also for the family who has to guarantee 24-hour a day medical assistance. ALS patients want to live, but in Italy the State does little or nothing to help. The cost of keeping an ALS patient alive is on average 100,000 euro per year; but a region such as Lombardia, considered to have one of the best health authorities in the country, guarantees a maximum of only 500 euro a month.
Therefore, many ALS incurables who are unable to count on appropriate health care and are prisoners of their body but with full mental faculties, decide to refuse a tracheostomy which becomes necessary when their lungs stop working. By refusing this treatment they go towards a slow, painful death through suffocation. This story tells the daily life of four Italian families living with an ALS patient, their suffering, their dignity and their will to live.