26 November 2015
Some illnesses cannot be cured. Some people, however, do not believe any gloomy predictions and carry on fighting with these illnesses. And they do beat their illnesses, because they never lose their heart, they are ready to make their way and face appalling hardship. Nastya’s illness was diagnosed at a very young age. The doctors said that the child would never be able to walk and would die very soon. Now Nastya is 13; she is alive; she goes to school and makes friends very easily. Moreover, thanks to her the people with SMA now feel a glimmer of hope. The journalists make reports and articles about the girl. And her mother struggles for her daughter’s health to try and keep alive the hope for recovery.
Nastya’s life should be compared with a fragile but at the same times resilient plant, which has grown up in tough conditions, or in the wrong place. Just like the wind bends the trees down to the earth, the illness tries to break her down — but the girl does her best to overcome it, she squares her shoulders time and again. Nastya has suffered from the complications, and even from an insufficiency of medical care: there were some refusals to provide her with medical care,
as the child was terminally ill, thus she would have been aimlessly tortured by the treatment.
Nevertheless, during 13 years many kind and compassionate people appeared near the girl. We met Nastya when she was only four years old. Since then you have helped to buy for her experimental medicine and body fixing devices, to pay for rehabilitation courses. Effective treatment, orthopaedic apparatus and many other things supported her and helped to battle against the terrible illness. A thick forest has raised around the fragile plant, which is now carefully protected from any nasty weather.
Today we beg you for help again. During the period of maturing and intensive growth the progression of scoliosis became more rapid, as her back muscles are lean. The doctors from Saint-Petersburg, who observe the girl since the illness has been diagnosed, admit that the corsets produced in this country do not manage to perform their function properly after the load has been increased. At their recommendation, last two years Nastya has the corset for permanent wearing manufactured specially for her in Germany. Owning to this, many complications have been avoided, including the most serious one, which is pressure on internal organs causing their dysfunction.
An impending danger has been escaped again. But an obstacle still remains: flying abroad and producing the corset (which is to be manufactured again from scratch each time taking account of the Nastya’s state of health) are very expensive. The family will not manage to pay for them on their own. We beg you to help in collecting EUR 3 679 to pay for the next trip. They are flying 11 January — the family is not able to collect such a sum for the short period of time.