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Help a child and you will know that you live for

Organized by: telnykh olya

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THE STORY:

Help a child and you will know that you live for a good reason! Vanya, 2 years and 5 months, Zhitomir, Ukraine, he suffers from the rarest in the world Primary Immunodeficiency – IPEX syndrome Charity collection ($ 203 194) to perform BMT paypal: telnykholya@gmail.com qiwi: +380661963650 Internet card: 4731185602282185 VISA: 4731217110495437 webmoney: Z103972097997 U155928878648 E376406240881 R262067264227 For more than 2 years little Vanya couldn`t get an accurate diagnosis. Only after his parents managed to find funds for the survey in Israel, Vanya got an accurate diagnosis. During 2,5 years Vanya has been hospitalized 15 times, he has undergone anesthesia 14 times and 1 operation. He weighs only 8 kg. Vanya suffers from one of the world's rarest disorders. Bone marrow transplantation will save his life. From his mother`s letter: “Vanya was born in December 27, 2012. For the first month, everything was fine. Body weight gain was 1 kg. Then Vanya began to suffer from diaper rash and his cheeks reddened. And in just a few days the skin of Vanya`s body began to desquamate. The dermatologist said it was ichthyosis... The geneticist confirmed the diagnosis. The hydrolotion did not help. When Vanya was 1 month old he smiled and crooled. But at that time he was constantly crying. After spending a week at home, my son gradually began to eat less, and over the weekend he became quite weak. And so, we went to the regional hospital. Vanya was weighed; they found that his weight was 3800g while Vanya weighed 4500g before that. Then Vanya received intravenous therapy, injections, etc. A week later his blood stopped to clot and Vanya was taken to the intensive care department. Vanya received blood plasma, his blood began to clot and we were transferred back to the patient department. The dermatologist came and said that the skin problems are caused not by ichthyosis, but some erythroderma. But the geneticist told about ichthyosis. They decided to send us to Kiev to set an accurate diagnosis, to find out what was happening with Vanya`s skin. As for the general condition of the body, the doctor did not understand what was happening. Vanya had a high level of leukocytes; she even thought it was HIV. Test results were normal. As for the child`s weigh, sometimes he was losing it rapidly and sometimes the weigh didn`t change.”

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