26 June 2018
The list of Arseny’s diagnosis takes two pages of a medical statement. But even these few names are enough to understand how hard it is for the baby and his mother to live. The cerebral palsy does not allow Arseny to move. The epilepsy does not allow the nerve cells to form in his brain and to develop his skills. Congenital heart disease has delayed the growth and development of the boy for the several months at the very beginning of his life. At the moment there has already been a heart surgery, but there still are consequences of the disease. A dislocation of the hip joint does not allow Arseny to lean on the leg, because the femur, which does not have a point of contact with the pelvic bone, grows directly into the soft tissues, and this is very painful. Finally, the anemia of Diamond-Blackfen — the bone marrow of the boy does not produce the red blood cells in the right amount, the baby is given a blood transfusion 2-3 times a month, but hemoglobin still does not rise even to the minimal normal levels, which excludes the possibility of any surgeries connected with big blood loss, at least in Russia with its treatment standards.
Already a lot for one child, right? And how much more can still be added, if nothing is done! However, this is exactly what Arseny’s mother is offered: watching, waiting, correcting the consequences. But Arseny’s mother knows very well how it is — when a child dies, and nothing can be fixed. Five years ago she lost her eldest daughter. Arseny is her treasure, and she simply can not look and wait: now something can still be done, then, when her only child is suffering from pain, it will be too late to correct mistakes.
The trouble is also that Arseny has very little time. Before the age of 9, bone marrow transplantation must be completed, it will restart the body and normalize the blood composition. Before the age of 7 — it is necessary to conduct the hip surgery, later the child will begin intensive growth, and making the joint prothesis will become impossible even in hospitals abroad. Mom learned about this from German specialists — the Russian has asked her to wait again: what else could they do if there are no conditions in our surgery rooms to conduct such a surgery on a child with Diamond-Blackfen? in our conditions Arseny will die during the surgery from the blood loss.
Arseniy will be 7 on August 9. In the Asklepios clinic, where a joint prosthetics could be done for the boy, there is a huge line of patients from all over the world. But Arseniy was lucky — the opening on July 2 has appeared. Even twice lucky — the fund «PomogiRebenku.ru» raised funds to pay for this surgery. But after that, the boy has two more months to spend in the hospital. During these two months he will be getting blood transfusion on schedule, without which he can not live yet, and receiving recovery treatment. But the family doesn't have a possibility to raise funds to pay for the post surgical treatment. Will Arseny be lucky for the third time? We want to believe that yes, otherwise all chances for a normal life for the boy will be lost: the hip dislocation will not allow him to learn how to walk, no clinic will take him for cerebral palsy rehabilitation. And the only thing that will be left for his mother is to helplessly watch how her child is suffering and to try to manage healing bedsores, because he definitely will not be able to get on his feet. The cost of the post surgical period is EUR 9,500 and they are needed urgently. We are announcing the emergency fund-raising for Arseniy and we believe that you will help!