This is what Nazar’s mother shared with me:
Now Nazar is 14 years old. At 13 he totally stopped walking and got into a wheelchair. In early August 2017 he broke his leg and was operated on. But because of his main diagnosis Nazar could not recover after the operation. A few days later (he was still in hospital) he completely stopped moving, swallowing and breathing and unconscious he was transferred to the Intensive Care Unit. Almost 2 months he spent in the Intensive Care Unit connected to a medical ventilation apparatus. During this time, in addition to the medical staff, we (mom and dad) were also constantly with him as he was not able to speak and move. He regularly needed to raise his legs and arms to somehow ease the day-and-night lying on his back ... He asked us to be with him all the time, because otherwise he felt very uncomfortable. Nazar was in the general ward where at the same time from 1 to 4 other children of different ages and with different diagnoses (including infectious ones) layed with him. Our other 3 children (Zakhar - 10 years, Christina and Ksenia: twins - 7 years) during this time were living with our relatives or friends. The final decision to take Nazar home we took when a 12-year-old boy died in our presence and his mother jumped out of the window, from the 6th floor of the intensive care unit where we layed.
In early October we took Nazar home and our entire family is now at home. But Nazar needs constant care of both of us as many procedures we can do only together. For example we need even three people to be able to change his bed sheets. We are not able to leave him for a minute since he is immobilized (he moves only with his hands), he is not able to call us (he speaks only in a low whisper since has a tracheostomy) and he is connected to the medical ventilation apparatus. Therefore we do not have an opportunity to work now (Victor, Nazar’s dad, had to take a decision to dismiss from a good job) and our family needs financial support for Nazar’s medical support. We now spend about $400 every month for Nazar’s care only (medicines, massages, etc.).
We will be grateful for any support. May God bless you!
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