29 May 2018
When, at 35 weeks of gestation, Petya’s parents heard about the diagnosis of the child, the world split into two parts for them — two different realities in which there are completely different laws of humanity. In one of them, the doctor during ultrasound, smiling, says: «What an adorable club-footed little kid.» In another, a few weeks later, he with a stony face reports that the child has a pathology of the development of the spine, and they should, without hesitation, abort the pregnancy, which means to kill the child at the time when many children are already able to appear by themselves. In the maternity hospitals of the region, the family was told that they will deliver a baby, but neither doctors nor administration are intended to carry out any measures to save an unviable child. In order not to lose their son, the parents were forced to urgently seek money and an opportunity to get to Moscow. There, directly from the birth chamber the baby was taken to the department of neurosurgery of the NPC «Help to children» by the paid ambulance, where on the second day of life they performed a spine surgery, thanks to which Petya remained alive.
What happens? In our system of guaranteed free medical care there is only place for healthy children who do not require anything extra? And if you are sick, then this system is not for you? Now Petya is 6 years old, he has a younger sister, the girl, fortunately, is healthy, and the family had a chance to find out how different are the worlds where their children live. No one set conditions for the birth of a second child to the mother, and the family did not pay for any medical services. Petya is still considered not needed to anyone, except his parents.
Peter himself completely disagrees with this injustice towards him. From the very first second of his life, he announced himself and his intention to live by a loud cry, although his parents were told that he will not be able to breathe after the birth. He suffered several complicated surgeries, two of them on the spine, he was loosing his skills, was forgetting how to talk, but always fought and restored the lost. Every morning he insists on putting his orthopedic devices on his feet, because they allow him to walk — a little and through pain, but by himself! He makes crooked mushrooms and elephants of playdough by his disobedient hands to stop anyone from forgetting that he is alive, he is capable of much and he is needed, simply because he is!
But the system still doesn’t want to notice the little boy, who was stamped with a «unpromising, untreatable diagnosis». To pay for rehabilitation, treatment, care, special footwear parents have to look for funds. It is unrealistic to earn enough: the family has a mortgage, two children, one of whom is disabled, only dad can work. And recently the mother was diagnosed with the tumor in the spine, after its removal the woman was paralyzed, and she still didn’t fully recover. It is even hard to imagine how the mother copes with Petya and his sister while her husband is at work.
We very much ask you to help to buy a good wheelchair for the boy. It will make the care easier, and will open the way to independence for the child. The wheelchair for Peter must be selected individually, taking into account the peculiarities of his illness, and it’s price of 251,700 rubles substantially exceeds the one that the Ministry of Health is willing to pay for the comfort and safety of a sick child. The parents do not have such money. We ask for your help, because Peter and his family now need it very much. And also because we are willing to stay in the reality where the norm is to help, to save, not to brush aside, underestimating the cost of life and fate of a person with a diagnosis.