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Our son Nikola was born on September 23, 2014 — a very wanted and deeply loved baby after a normal, healthy pregnancy.
But just five hours after his birth, our world turned upside down. Nikola had hemorrhages in his brain, stomach, and lungs. He began having convulsions that lasted for 48 hours. Those first 56 days of his life, spent alone in the neonatology ward, were the loneliest and hardest days we could imagine for our tiny baby.
Nikola is truly a survivor. He went through treatments in Sofia, Plovdiv, Varna, and back to Sofia again before we finally received an answer. His diagnosis was caused by a mutation of the ALDH7A1 gene, which means his body cannot process lysine. This condition — Pyridoxine-Dependent Epilepsy (PDE) — leads to seizures and developmental difficulties.
Today, Nikola is almost 11 years old. Every single day, he takes high doses of vitamin B6 and arginine, and follows a very strict low-protein diet. He goes to a special school with an assistant teacher who helps him, but memory challenges make learning a daily struggle.
Because of PDE, Nikola has to live on a vegan diet. This is not his choice — it’s what keeps him alive. It is not easy for him, especially as a child, but it is vital for his health. The vitamins, the diet, and the constant care are what allow him to keep moving forward.
Nikola has shown us what true strength looks like. He has been fighting since the day he was born, and every milestone he reaches is a victory. We are so proud of him, and we share his story with the hope that it brings more awareness and support for all children living with PDE.
