The special girl Polinka

With the birth of a child, we all think about how life will turn out, where let the child go – simply to dancing or better to the ballet? We dream how he will have been running to meet you, opening his arms! But sometimes, life writes its own scenario, in which dreams are simply broken. Polina was born, seems to be absolutely healthy, but at 7 months were the first anxious symptoms: the child never leaned on his legs, did not sit down. The diagnosis is spinal muscular atrophy (SMA) sounded like a verdict, a rare genetic disease that quickly progresses. 

In an instant, the whole world of Polina and her mother collapsed. Polina doesn't go, doesn't stand, sits only with support and her disease, unfortunately, is progressing. Doctors told Polina's mom that the girl will not live to the 4-years old, that the disease is rare and incurable. But now, with the advent of the first medication in the world from (SMA) – Spinraz – they have a hope and faith that a girl could ever make her first step and run towards her relatives. Unfortunately, the medicine Spinraz is not registered in Ukraine and used only in clinical trials in the US, so for our children with SMA it's yet not available.

Polina is an intelligent girl, with the same wishes as all healthy children, she does not sit in one place, she wants to move all the time, do something. At the moment, the most important thing is to support the state of Poli at the level that there is, also do not to give insidious illness or disease SMA to take away from the girl any more skill. The situation is complicated by the fact that many doctors do not know what to do with these children, for most of them the AGR is a verdict, only a matter of time. But it appears that it's possible to support and slightly suspend the progression of our disease. The Bersenev clinic has an extensive experience in using of maintenance medication therapy for children with a disease like my little daughter. And with systematic treatment – there are good results.

Unfortunately, Polina's mom to pay on her own for medicamental treatment in the clinic cannot. She lives in a rented apartment in the village Pisochin (Kharkov region), together with Polina, oldest daughter and grandmother. The family moved 3 years ago from the ATO zone (Donetsk region, Gorlovka town). Father of Polina does not live with them and does not help! Because of Polya needs constant care, her mother can’t work in her specialty. Therefore, she appeals for help to people who are not indifferent. From a letter of mother: Now it's important for us don't to waste time! After all, the medicine, perhaps soon will appear in Ukraine and then my special girl will be able to make a step herself! This is her most cherished dream!

Name: Kozenkova Polina, 23.03.2011

City: Pisochyn town, Kharkiv region

Diagnosis: spinal muscular atrophy (type 2)