Help Us Save the Children!

He who saves one life saves the world entire

Serezha Shapoval

I am Marina Shapoval. I have a son, his name is Serezha, and he is only three months old. We need financial help to pay for providing Serezha with a bone marrow donor. The fact is, our little kid has congenital immunodeficiency. Earlier, our little daughters died of the same illness. They were 6.5 and 5.5 months old. And now the only chance to save our son is marrow transplantation. Sometimes one of the parents can be a matching donor, sometimes a brother or a sister. But in our case, unfortunately, neither I nor my husband can be a suitable donor, because the risk of rejection is too high, and Serezha's sisters are dead. So, the only chance to save our little kid is transplantation from an unrelated donor. Our country has no donor bank of its own, the graft is to be ordered abroad, and this procedure, unfortunately, is very expensive.
Serezha is such a charming and smiling boy. He needs help to survive. While there is no donor as yet, the doctors do everything possible to support Serezha, and we can only whole-heartedly thank them for this. Our son lives in sterile conditions, but this cannot go on for ever. A donor is vitally necessary for him, as soon as possible.
Please help us save our only son! Our only hope is your help and compassion!

Marina Shapoval
August 29, 2006

The doctor's comment

Serezha Shapoval, born May 26, 2006, is a patient of the Department of Marrow Transplantation. His diagnosis is primary immunodeficiency, Omenn syndrome. This disease is extremely grave, accompanied by recurrent infections and skin alterations of the generalized erythroderma type. Presently we stabilize the child's condition with great difficulty, using immunosuppressive and antimicrobial therapy. The only method suitable for this child's treatment is marrow transplantation. The boy has no related HLA-identical donor. After preliminary search in the Belgian cord blood bank, a fully HLA-matching graft was found. In a week, repeating high-precision molecular typing will be performed in Germany. Both sisters of this boy died of the same disease in infancy.
We ask for your help in financing the purchase of the graft, which costs approximately $10,000-15,000.

Head of the Department of Marrow Transplantation
Dr. E.V. Skorobogatova

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News

13.05.2009 Serezha's parents Andrei and Marina recently visited Moscow. They told us that the boy is feeling just fine and showed us his photographs:

20.06.2007 Fine news about Serezha Shapoval, who turned one year old on May 26. The doctors have allowed him to go home from hospital. We wish him a happy return to his home in Vladivostok. Serezha's parents thank all who helped save their baby.

11.04.2007 Little Serezha Shapoval, who had spent 8 months at the Department of Marrow Transplantation with his parents, was now allowed to leave his sterile ward. The baby, his mother and grandmother went to the House of Hope cottage today, and the whole department saw them off. However, physicians of the Department of Marrow Transplantation will still keep a close eye on his condition for a long time.
The boy's physician-in-charge Yu.V. Skvortsova and the Head of the Department E.V. Skorobogatova tell about his condition:
"Patient Sergei Shapoval with severe combined immune insufficiency, Omenn syndrome, has been receiving treatment at the Department of Marrow Transplantation since August 7, 2006.
Presently the only treatment method for Omenn syndrome is marrow transplantation. Search for an unrelated donor was initiated. However, since the child's condition progressively deterioated and there was high risk of infectious complications, a haploidentical transplantation from the boy's father was performed on October 12, 2006. The chimerism test showed graft rejection, and we decided to perform transplantation of umbilical cord blood from an unrelated donor. The transplantation was scheduled for the middle of April. Before preparatory chemotherapy, we performed another chimerism test on March 26. Suddenly we saw that 26% peripheral blood cells had donor hematopoiesis! And the main thing is that we studied the T-cell chimerism (it is this population of lymphocytes that largely determines the clinical symptoms) and saw that all of them were of donor origin.
Presently the child's condition is satisfactory and stable. He may receive out-patient treatment now. But it is too early to say that his immunity has been fully restored. Considering the specific features of his main disease, there is still a high risk of graft rejection. In this case, umbilical cord blood can be used as soon as the child's condition becomes worse."

4.04.2007 E.V. Skorobogatova, Department of Marrow Transplantation:
"We are glad to see that the situation with little Serezha Shapoval is not too bad. Before preparing for his second transplantation, we made some more chimerism tests and checked his immune status. And it turned out that he had 26% cells of donor origin (his father was the donor), although complete rejection of the graft was observed several months ago. Probably a certain pool of donor cells remained hidden for some time and suddenly showed itself. Maybe this is why the child is in somatically fine condition and shows no activation of his main disease, which always started from skin manifestations. We were also pleasantly surprised to see that restoration of his immunological parameters is beginning. The B-cell level is still lower than normal, but this is permissible: humoral immunity is sometimes restored 8 months or even 1 year after a haploidentical transplantation. The boy maintains his immunoglobulin level fairly well. He has no fever. His virological status has been fine for several months. We performed another chimerism test today; later we will inform you about its results."

16.03.2007 Dr. Elena V. Skorobogatova, Head of the Department of Marrow Transplantation:
"About Serezha Shapoval: the graft consisting of his father's marrow was rejected many months ago. Now the child is waiting for umbilical cord blood from Belgium to have allogeneic transplantation of hematopoietic stem cells. Somatically, the boy is fine: smiling, satisfied, active, without infectious problems."

18.02.2007 Elena V. Skorobogatova, Head of the Department of Marrow Transplantation, tells:
"Serezha Shapoval is in somatically good condition, and his mother is glad to see him grow up and develop. He will have a transplantation from an unrelated donor in March or April. Umbilical cord blood has been found for him in Belgium. The degree of matching is exceptionally high for umbilical blood grafts: 9/10."

30.01.2007 A matching donor has at last been found for Serezha Shapoval. Actually, it is not bone marrow but umbilical cord blood, and the material is being stored in the umbilical blood bank. The problem requires more money now: 22,000 euro is needed to pay for the graft!

16.01.2007 Serezha Shapoval is in satisfactory condition, although graft rejection has already been documented. All cells in his blood are his own. Now transplantation from an unrelated donor is planned. Possibly it will be umbilical cord blood.

11.12.2006 Dr. E.V. Skorobogatova, Head of the Department of Marrow Transplantation, is telling: "Serezha Shapoval has had rejection of donor cells after a haploidentical transplantation from his father. Transplantation from his mother will also be haploidentical; i.e., only one-half of all antigens will be matching. This means high risk of rejection even after T-cell selection. We need a graft that will contain a sufficient amount of immunocompetent cells. Therefore, search for a matching unrelated donor is still an issue. So far Serezha is in fairly stable condition, without serious infectious problems. But the blood counts are low, and the child needs transfusions. Although he lives in a sterile ward, there is high probability of infectious complications, viral ones above all. In addition, activation of his main disease is not excluded, and aggression of the lymphocytic pool against his own skin or mucous cells is possible. The sooner he has the second transplantation, the better."

20.10.2006 Since Serezha Shapoval was in extremely grave condition and needed urgent intervention, the doctors performed marrow transplantation from his mother. For this purpose, her bone marrow was subjected to a purification procedure. The kit for this procedure costs 187,000 roubles (almost $7000); Alexander provided the remaining part of this sum.

They have helped:

28.02.2007 Dmitri gave 100,000 roubles ($3775) to the parents of Serezha Shapoval.