Foscavir for Roma and Maxim - $6,820.
Thanks to NFT sale and those who made it possible.
Roma is three and a half years old and from Vologda. Maxim is five years old, from a small town in Bashkortostan. But for doctors at the Dima Rogachev Children's Hematology Center, their stories are very similar. Both children have a very severe genetic disease, which affects only boys and dramatically impairs the function of the hematopoietic and immune systems. Wiskott-Aldrich syndrome entails dramatic deterioration of blood clotting, reduce resistance to infections, and produce a high risk of malignant tumors. Normal full life with this disease is only possible after a bone marrow transplant from a healthy donor: in this case, transplantation replaces the hematopoietic and immune systems with a donor's cells. But transplantation is a difficult and aggressive treatment. And during the period when the child is recovering from the introduction of donor cells, severe infectious and immune problems are possible, associated already with the consequences of the transplant itself. Sometimes these problems are of a very persistent nature, lasting many months or even years
Maxim underwent a second transplant in 2021 because of partial rejection of donor bone marrow. Roma underwent a transplant a year and a half ago, but not all of the problems are solved yet. Both boys have viral infections, which would be harmless for healthy people, but are very dangerous during the period of low immunity after transplantation. Roma got pneumonia caused by one of the herpesviruses, and Maxim's tests constantly show cytomegalovirus. And as usual medications did not help either of them, we had to buy a foreign medication "Foscavir".
Now both children continue treatment, and we, of course, are waiting for improvement.