After a charity fundraising meeting for Yegor Kudryavsky @dubishin/blagodiyna-zustrich-zbir-koshtiv-for-yogorchik, he decided to write posts about people with SMA.
To begin with, let's consider what SMA is. SMA (Spinal Muscular Atrophy) is a genetic disease. You can learn about this here https://en.m.wikipedia.org/wiki/Spinal_muscular_atrophy, and about the types of SMA here https://treat-nmd.org/treat-nmd-diseases/spinal-muscular-atrophy/. If we speak the vernacular, then the SMA is atrophy and weakening of the child's muscles, curvature of the spine, shortness of breath and eating, pain, weak immune system to lung disease and more. This is not to mention the auxiliary devices for the child's life (ventilation, saliva ejector). All these detections can be in separate types of SMA.
When parents are faced with this disease or other form of disability, there comes a moment of panic. Doctors also intensify panic moments. Instead of supporting their families and helping their parents, they act as psychologists and gardeners. These "white robes" of Hippocrates sow the seeds of fear, conscience and helplessness. The most important aspect of medical "agriculture": prepare for the death of your own child and do not fight for his life.
Of course, there are parents who go against the doctors' predictions. But unfortunately there are those in whom the "grain" of fear grows and begins to bear "fruit":
- Parents are in constant stress, depression, fear and panic. They believe that a child with SMA or another form of disability is a family grief, a deadly disease, karma, a family curse, and the Lord's punishment.
- Parents begin to morally and psychologically program their child with a disability to death with the words: will not live to two years; save him from death; his (her) will not happen soon.
- Parents try to do everything to make their child with 3. features healthy, normal and similar to others. That is, that their family was at the average level. The desire to be the same for everyone and like everyone else (a kind of personal selfishness that should not be confused with the struggle).
To bring parents and people a little closer to the truth about SMA - I will write about the lives of these special people and their families, let's get acquainted with modern drugs "Spinraza" and "Zolgensma" for SMAs. So that every reader can get acquainted and learn more about SMA.
