On Rare Disease Day in 2024, we shared a story on Facebook from Viktoriia in Ukraine, who shared that her five-year-old son, Nikitka, was at risk of losing his eyesight due to Brittle Cornea Syndrome (BCS). BCS, a type of Ehlers-Danlos syndrome, is a genetic connective tissue disorder that causes the cornea to be thin, fragile, and prone to rupture. Viktoriia was pleading for help, that someone would see her story and help her little boy, and did not want to miss even the smallest opportunity to try and save his sight. Nikita had already suffered a rupture in one eye, and his other eye was at imminent risk.
Viktoriia’s plea was answered by Janine, whose daughter Karissa had sadly passed away in 2020, and who had been a corneal organ donor. Janine contacted the Lions World Vision Institute (LWVI) and set in motion what would be an incredible journey of people coming together to help save Nikita’s sight. We’re delighted to share an update on Nikita’s progress today from Viktoriia.
“A year ago, I never thought any of this would be possible. That he would wake up without asking for a tissue to wipe his tears, that he could go outside and not always ask for sunglasses, that he could play on a tablet without the burning in his eyes, that he could hear almost like the rest of us, and finally, that he would go to school and learn like other children. I couldn’t imagine how it would look, but I don’t need to imagine anymore—because it’s happening.
January 25, 2025 — our first corneal transplant on the right eye. If we hadn’t done it, the eye would have simply ruptured as the left one did. April 12— the operation on the second eye. May 5— a perforation on that eye, and we had to rush to save it again. After two ruptures on the left, anyone could have broken, but Nikita is our hero: patient, brave, and full of surprising joy. He still sees with that eye, and every time he talks about school, books, or friends, it feels like a victory shot.
Thanks to the help we received, Nikita was fitted with hearing aids in London, and now we are under the care of a top, specialist audiologist there — a game changer for his everyday life.
We spent the whole summer in Ukraine, with periodic trips to London for check-ups. Every trip is a test—morally and financially—but I am willing to do anything to achieve the best possible outcome. Standing outside the operating room in Kyiv, I promised myself and the world: I will not let him lose this world. And I will do everything to keep that promise—step by step, even when the road feels unbearably long.
For many families, attending the 1st class in school is a special milestone… but for us, it’s a victory. Not just over the war that surrounds us, but over the quieter, more personal battle we fight every day — with illness.
We see him becoming more confident, reading more easily, laughing more—and those small wins give us the strength to move forward. We still have many stages ahead: several planned eye surgeries and upcoming urology procedures. We don’t hide our fears, but we don’t lose hope. What matters most is trusting the doctors, the donors, the medical team—and Nikita himself.
We are endlessly grateful to the cornea donors and to everyone who has supported us with words, actions, or finances. Without you we would not have managed. Your help is more than medicine or money; it is proof that we are not alone in this fight, that our fear and exhaustion meet real kindness and real help.
If you’re reading this—thank you. For a repost, for a message, for a prayer, for any help. We keep going forward and believe that the next year will bring more small victories that, together, will become a great recovery.
With love and gratitude,
Viktoriia — Nikita’s mom.”
