"By January 2005, sixteen patients received unrelated marrow transplantations within the framework of this program:

We are very sorry to tell that six children died:

Andrei Mikhailov, 3 y.o.
Dima Skorikov, 11 y.o.
Ilya Rusakov, 11 y.o.
Serezha Papkov, 15 y.o.
Sasha Selezneva, 9 y.o.
Artem Blashchenko, 5 y.o.

These deaths were inevitable: not due to some or other errors in the treatment but due to complications, which can be expected in each transplantation and can happen to patients in spite of all preventive measures. Marrow transplantation is a potentially fatal operation: even the procedure itself involves a risk from 10 to 20 percent, depending on the disease and on the specific clinical situation. Besides, there is always the danger of a relapse. Here our results do not differ from those seen worldwide; that is, complications that we encounter are the same as everywhere.

It is too early to say anything about statistics when there are only 16 patients. But one thing can be said for sure: without the transplantation, all these children would be dead with 100% probability. The doctors can risk marrow transplantation only when they are completely sure that the disease presents a much greater risk for life than this operation.

In certain cases, transplantation is the recommended method from the very beginning of the disease. For some diagnoses, transplantation must become the main recommended treatment method, in spite of all the dangers. But access to this method is still very limited: our department does not cope with even 10 percent of the demand existing all over Russia. The development of the program and the desired increase in the number of our patients primarily depend on the number of beds and on the availability of a sufficient number of suitably qualified medical nurses. Unfortunately, these problems are very difficult to solve."

Abou our children:

A year after the transplantation, one can say that the worst is already over for the recipient.

Serezha Tropin Vadik Markunin	Maxim Matveev	Igor Obolenski	Dasha Krasavina	Stas Krasavin	Dima Rogachev

One of the first patients within the new program was Nastya Savelyeva, a girl of ten. Search for an unrelated donor was started quite early in her case. As the doctors say, there are so-called prognostic factors, which can be used for predicting the possible course of the disease as early as in its beginning: whether there will be a long remission or the chances for such remission are slight. In Nastya's case, it was immediately clear that transplantation would be her only chance. But the problem was that Nastya is an orphan (she arrived at the hospital after a tragedy in her family). And the doctors could not venture this transplantation if not for the help of volunteers. Usually, all patients of the Marrow Transplantation Department are constantly with their parents, because each of these children needs round-the-clock care and very strict observance of sterility requirements. Nastya had a nurse near her all the time while it was necessary, and volunteers of the Help Group provided everything necessary for the girl. The posttransplantation period went without serious complications. Now Nastya is feeling good. And the best thing that she has got a new family now: mother Tanya, who came to us and met Nastya thanks to this Web site, and two sisters.

Alena Myakotina (myeloid leukemia, unfavorable course of the disease) had earlier undergone marrow autotransplantation at the RCCH. However, the girl had a late relapse, and she had to undergo the second transplantation, this time from an unrelated donor. Now Alena is feeling all right. She has become much taller and much more grown-up during this year. The girl lives at home, in the Moscow region, and visits the hospital once a month or even less frequently.

Maxim Matveev is fourteen now. He is in his ninth school year. He reads a lot of books and wants to become a doctor. After this school year is over, he will take entrance exams to a specialized medical school.

After the transplantation, Maxim had very severe graft vs. host disease with a pain syndrome. Even analgesics didn't help. The boy went through this difficult time with great courage and fought bravely against the disease. His mother was always near. We must say a few words about her. This woman has three sons and raises them all alone. In such a situation, one must be a real hero to take all the necessary care of a very sick child.

The Matveev family are from Maikop, a town in Southern Russia. Our benefactors helped them rent an apartment in the Moscow region, so that the boy could regularly visit the doctors and his mother could find a job. And so far they are all right. Maxim says that February 18, 2004, the date of the transplantation, is his second birthday. When "celebrating the first anniversary" of his transplantation, he received a personal computer as a present. This computer will surely help this serious and grown-up boy in his studies.

Four more children received transplantations in the spring of 2004. Their situation is not bad either. Little David Gubaidullin is already at his home in Bashkiria, but he regularly comes to the RCCH to receive treatment according to the schedule.

Serezha Tropin, Vadik Markunin, and Igor Obolenski, together with their parents, live near the hospital in an apartment rented for them. Thus, they can live in a kind of home but still visit the doctors and receive the necessary treatment without any problems no less than once a week. We thank Mark, who paid for Serezha Tropin's transplantation and now supports all three boys by renting this apartment for them.

In his family, Serezha Tropin is the second child with histiocytosis, an extremely grave hereditary blood disease. Alina, the elder daughter of the Tropins, died eight years ago. There was no donor for her in the family. The younger child, Serezha, has been under treatment at the RCCH since he was six months old. The boy went through unrelated marrow transplantation quite well; now he is recovering.

The story of Dasha Krasavina and Stas Krasavin is another example showing not only the skill of our doctors but also the energy and courage of the parents. This is a very rare case in medicine: marrow transplantation was performed for two siblings almost simultaneously. The parents risked this, understanding that there was a real danger of losing both children but also knowing that success depended on timely and early help. And they managed to provide the necessary care for both!

Leonid, the father of Dasha and Stas, handed us this letter:

"Our family is from Ekaterinburg. We came to the Marrow Transplantation Department of the RCCH in order to give our daughter Dasha and our son Stas a chance to survive. Their diagnosis was like a death sentence: Hurler syndrome. This genetic disease had been regarded as incurable in Russia before. No words can express our devastation and helplessness at the news that our children were incurably and fatally ill.

While we were still in Ekaterinburg, we summoned our strength and started fighting for our kids' lives. After telephone conversations with doctors from the Marrow Transplanation Department of the RCCH and with Lina Saltykova, president of the Charity Foundation for Seriously ill and Abandoned Children, we starting searching for money in order to find marrow donors in the European Registry. These people made Dasha's and Stas' treatment real and started to lead us along this way. Without help and advice received from the doctors and from Lina Saltykova, we wouldn't manage to prepare all the necessary documents and to raise this sum of money, which is just enormous for our family.

Both Dasha and Stas were admitted to the Marrow Transplantation Department in grave condition. And here, in Moscow, we also found understanding and support. The Foundation paid for the expensive tests, examinations, and medicines. It often turned out that even some specific medical equipment, as well as domestic appliances and audio/video devices at the department, were bought for the money collected by the Foundation.

And there was also invaluable psychological help provided to us by the hospital church and by the Help Group. There are always a lot of people at the church: children from various parts of our vast country, musicians, clowns, benefactors. Lina Saltykova always finds time for everybody. We never had to delay our visit or wait for the solution to an unexpected problem. And the main thing that here we saw sympathy and love for the ill children.

We thank our doctors from the Marrow Transplantation Department. We thank the Help Group and personally Lina Saltykova. We also want to use this chance to thank those who helped us in the fundraising: Parents and Children Department of the Sverdlovsk Regional Ministry of Public Health, and sponsors: Evgeni Roizman (Russian State Duma Deputy) and Urals Pipe Company."

Now Dasha Krasavina is at the Department of Immunology. In her condition, she could already go home, but she will have to wait for her brother. Stas Krasavin and Dima Rogachev (their transplantations took place in December) are still at the Marrow Transplantation Department.