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Yura Ponomarev

Dear mothers and fathers, grandmothers and grandfathers, brothers and sisters and just kind people! My little son is incurably ill. He is only 2.5 years old, but he already knows what pain is. His diagnosis is mucopolysaccharidosis type 1. The doctors say that such children rarely live beyond the age of 6 and the only hope for recovery is transplantation of donor bone marrow. But search and activation of a donor in Germany are necessary, and they cost 15,000 euro.
Raising this sum is impossible for our family. I cannot earn money, because I spent a lot of time at hospitals with my son, and my husband is simply a driver. We have nothing to sell: we have no apartment of our own (we live together with our old parents) and no car.
I understand that the times are difficult now. But there are still people who have compassion and feel others' pain. Please help us! Even one rouble will help. Please give our son his only chance to live!

With hope and respect,
mother of Yura Ponomarev

The doctor's comment

A joint meeting of hospital specialists on October 28, 2008, considered possible further therapy of patient Yuri Ponomarev, b. June 28, 2006, diagnosed with mucopolysaccharidosis type 1 (Hurler's syndrome). The only possible way of curing this disorder is allogeneic transplantation of hematopoietic stem cells, which should be performed as early as possible, before lesions of central nervous system and internals develop in the organism.
The child has no related HLA-matching donor, and therefore it will be necessary to search for a hematopoietic stem cell donor in an international register.
If an HLA-matching donor is found, the date of admission to the Department of Marrow Transplantation will be urgently scheduled for this patient.

Head of the Department of Psychoneurology E.S. Ilyina
Physician-in-charge S.V. Mikhailova

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News

7.07.2009 The fundraising for Yura Ponomarev is over. At last the whole sum required to pay for unrelated donor search and graft harvesting has been raised. Many thanks to everybody!
Yura is recovering after his bone marrow transplantation, which took place at the end of April. The boy has been allowed to leave hospital and begin out-patient treatment. Unfortunately, the boy has infectious problems now, and his blood counts have become worse. The physicians are presently deciding on the tactics of his further treatment.

4.05.2009 Yura Ponomarev underwent unrelated bone marrow transplantation on April 24. So far everything is more or less all right, but the first information about the actual results of the surgery will be known at least two weeks later. The sum required for graft harvesting has not yet been raised for Yura, and the boy's page on our Web site will be active until all financial accounts with the international register of hematopoietic stem cell donors are completed.

19.03.2009 Bone marrow donors have been found for Yura Ponomarev and Katya Gordeeva. Yura's transplantation is planned for the end of April; Katya's is likely to take place in May.

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Many thanks to all who have responded!