Nikita Tulbure is fighting for his life with all his strength. Complications after the bone marrow transplant have been difficult, but each time he has overcome them and kept going.
“For more than three months, we have been dealing with grade 3–4 skin graft-versus-host disease (GVHD). It has been very hard: all his joints are stiff and painful, his skin cracks and his whole body is covered in wounds. He also needed emergency circumcision because of the skin complications. And then another crisis came. Nikita became critically ill when doctors found a dangerous fungal infection, mucormycosis, which is especially severe in people without immunity. He needed urgent surgery to remove the fungus from his nose. Everything inside the right nostril was removed down to the bone, and a little less from the left. Nikita may now have lost his sense of smell. Most frightening of all, the fungus reached his brain. All his GVHD medicines were stopped so his immune system could recover and help him fight the infection. Now we can only pray and hope that high doses of medicine and Nikita’s strength will destroy the fungus. We have a brain MRI every week. It shows that we have stopped the fungus from spreading, but treatment must continue until it is completely gone from the affected area of the brain.” — his mother, Vika.

Many of you have grown to love Nikita. How could anyone not love him? Despite the pain, he would always smile and say he was fine. Although he is not smiling now, stays silent and looks away, we pray and hope that his smile will return.
If you know Nikita or follow his story, please take two minutes to pray for him. He needs it so much ❤️

The urgent fundraiser is complete! Nikita will live!

Donations were collected through the foundation’s accounts and Russian bank details provided by Nikita’s parents.
The foundation’s accounts received 55,357 shekels.

Nikita Tulbure, 5 years old.
Diagnosis: the rare genetic condition dyskeratosis.
Fundraising for a bone marrow transplant.
Fundraising goal: $94,000

Our son was a long-awaited child. When we learned I was pregnant, we were overjoyed! But the pregnancy was not easy. At weeks 5 and 9, there was a risk of miscarriage. With hormone treatment, I was able to carry our little one safely. On March 29, 2017, at 16:30, a miracle happened: our Nikita was born, bringing new life into our home in every sense. We could not hold back our tears of joy. He was born at term, weighing 2.930 kg and measuring 49 cm. Every day, this little boy brought us joy and new, lovely surprises. But when he was 2, he became very ill with a respiratory infection. After that, he was ill almost every month. Blood test results led to a referral to a haematologist. He had courses of treatment, but nothing helped. This went on for six months. On September 9, 2019, he was admitted to hospital for more detailed tests. We had DNA sequencing and waited almost 3 months for the result. Bad news shattered our New Year mood: Nikita had a frightening genetic condition, X-LINKED DYSKERATOSIS CONGENITA. Words cannot describe our fear and pain. The disease caused dark patches on his skin that grew over time. His nails were very thin and brittle and began to separate from his fingers. He developed leukoplakia on his tongue with ulcers that were growing and could become cancerous. The most serious problem was aplastic anaemia, which badly weakened his immune system. Our son could barely see other children, and we hardly went outside. He could not run or jump because an injury could be dangerous: his blood did not clot well. Yet he remained such a cheerful child: curious, kind and caring. He loves toy cars and has a whole collection. He also loves playing football with his dad. Nikita is a very thoughtful, strong boy. Thanks to the Alyosha foundation, we raised enough money to go to Israel for a bone marrow transplant. But things did not go as planned. We have now been in Israel for a year and a half, and the transplant has still not happened because the only suitable donor left the register. We waited all this time and tried experimental treatment, but it did not help much. In January 2023, Nikita had a very serious illness and his condition deteriorated sharply. His bone marrow is no longer producing cells, and he now needs blood transfusions and bone marrow stimulation every week. We cannot wait for a donor any longer. He urgently needs a transplant from his father. It is very risky and difficult, but we cannot let him down. We must save our son. He is fighting this terrible illness so hard and enduring so much pain.

 

Vika, Nikita’s Mother