Nikita

Our son is a long-awaited child. Upon learning of the pregnancy, we were in seventh heaven with happiness! But pregnancy was not easy for us. At 5 weeks and 9 weeks, I had a threatened miscarriage, but with the help of hormone therapy, I successfully endured our wonderful child! On March 29, 2017 at 16:30 a miracle happened, our Nikita appeared and a new life entered our house! We couldn't hold back tears of joy! The baby was born at term with a weight of 2,930 kg and a height of 49 cm. Every day we rejoiced at this lump, each time he presented new pleasant surprises. But one day, our baby got very sick with a cold, at that moment he was 2 years old. And after that he began to get sick often, almost every month. Based on our test results, we were referred to a hematologist. Nikita took courses of treatment, but nothing helped him. And so it went on for half a year. On September 9, 2019, Nikita was admitted to the hospital for a more in-depth examination. He passed the DNA sequencing which we have been waiting for almost 3 months. Our New Year's mood was spoiled by bad news. We learned that Nikita has a very terrible genetic disease: CONGENITAL X-LINKED DYSKERATOSIS! What horror, fear and pain we experienced is beyond words! Because of this disease, we began to observe strong skin pigmentation, which increases in size over time. And also Nikita has problems with his nails: they are very thin, brittle and move away from the fingers. Leukoplakia of the tongue with ulcers, which increases and can develop into oncology. But the most terrible problem we have is aplastic anemia, because of which the immune system suffers very much! Our baby is limited in communication with peers, practically does not go out. Nikita can't run and jump, so as not to get injured, as he has poor blood clotting. Despite this, our baby is very cheerful! He is inquisitive, kind and responsive. Nikita loves to play with cars, he has a whole fleet of cars, and he also likes to play football with his dad. Nikita is a very caring and strong boy! Thanks to the Alyosha Foundation, we collected the necessary amount to go to Israel for bone marrow transplantation. But fate decreed otherwise, we have been in Israel for a year and a half, and we have not done a transplant, since the only suitable donor left the register and all this time we waited, underwent experimental treatment, but it did not give great results. In January 2023, Nikita suffered a very serious illness from which his condition worsened completely. Bone marrow cells are not produced at all and Nikita has become addicted to blood transfusions and bone marrow stimulation every week. We can no longer wait for a donor, and we urgently need a bone marrow transplant from Nikita's father. It is very risky and difficult, but we cannot let him down and must save our son. He struggles very hard with this terrible disease and suffers severe pain.