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Igor Komanov, 8 - thalassemia major beta

August 25, 2009, 7:00 9536 Author: Irina Gavrisheva, translated by Lena Nolte www.deti.zp.ua The fund-raising campaign is closed. Igor currently does not need your financial support but he really needs your prayers!

Igor in Summer 2009

Igor's Brithday is September 13, 2001

Diagnosis - thalassemia beta

How to help

Contacts

ATTENTION (07.12.2012).:

The fund-raising campaign is closed. Igor currently does not need your financial support but he really needs your prayers!

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Invoice from Israil clinic Hadassa (on Russian)

Igor Komanov has a very rare disease – thalassemia. In January, when he went to the hospital in Baku (Azerbaijan), the doctors said he would need a bone marrow transplant from a nonrelated donor. We knew that such form of thalassemia as Igor has is always an indication for the bone marrow transplantation. However, we hoped it would be possible to avoid it. It turned out to be impossible. Bone marrow transplantation is a dangerous procedure. Unfortunately, it’s the only chance Igor has – a chance not only for the life without blood transfusions, but for the life itself. Igor has a very rare form of thalassemia. Usually, the children with this type of thalassemia die before they turn 18. Igor is 7 years old, which means that if he doesn’t get a bone marrow transplant, he has already lived half of his life.

When it comes to the bone marrow transplantation, there is a rule – the less blood transfusions the child has received, the higher are his or her chances of success. Igor has been receiving the blood transfusions for the last three year, on average every second week. If a child has thalassemia, his hemoglobin should not fall below 90. If it does, it accelerates the erythrocytoschisis, affects the kidneys, liver, and heart. In order to maintain hemoglobin at the level of at least 90, Igor needs blood transfusions almost every week. Unfortunately, his family cannot afford it. But even if they could, it would mean staying at the hospital all the time, year after year, without a hope to get out of it, to go to school, to play with friends and so on. Another problem is high doses of Desferal Igor has to take. It’s a very toxic medication. However, it is the only drug that can remove the excess of iron Igor has in his organism. One of the main side effects of Desferal is deafness and growth deceleration. Igor’s mother said she met several children with thalassemia, who were of the same height as Igor, although they were 15 and 16 years old. Removing the toxic iron from the organism, Desferal surceases the growth of bones. At the end of the day, the children with thalassemia don’t live long, regardless of the years spent at the hospital and medications they have to take. No matter what Igor’s parents do, most likely he won’t be able to live longer than 17-18 years of age. His only chance is bone marrow transplantation. Such treatment can't be done in Ukraine, so Igor must go abroad. One of the most appropriate possibility is to go to Israil clinic Hadassah in Jerusalem. There are no other options except the bone marrow transplantation.

At present (August 25, 2009) 80 000 euros already accumulated for Igor on the bank account of Hadassah clinic, Israil. We need to collect the rest 30 000 euros to give Igor chance for the future life.

Igor with his parents

You can contact Irina Komanova (mother of Igor) +3 8 097 408 78 89 (speaks Russian only)

The fund-raising campaign is closed.

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