The Yotova Family Story
Submitted by Ivo’s mother, Victoria Yotova:
Ivo is a bright and beautiful 7-year-old boy with a huge heart and a big smile. He is the result of a deep love between Victoria and her husband, and from the very beginning, they knew he was special.
Victoria’s pregnancy went smoothly, and Ivo’s birth was full of joy and hope. But when Ivo was about three months old, Victoria started to worry. He couldn’t hold up his head, something most babies could do by then. Her motherly instincts told her something wasn’t quite right.
The family began a long journey of medical tests and doctor visits. Ivo was seen by neurologists, had scans, and was diagnosed with reduced muscle tone and a condition called nystagmus, which affects eye movement.
At first, doctors only recommended physical therapy. But when Ivo turned one, an MRI showed something more serious: he had less white matter, or myelin, in his brain than normal.
Eventually, genetic testing confirmed Ivo has Pelizaeus-Merzbacher disease.
The family went through shock, sadness, fear, and confusion. But slowly, they found acceptance, strength, and hope. And through it all, Ivo continued to grow in his own unique way.
Today, Ivo is a clever and loving child who wants to explore the world with curiosity and joy. He’s also very tidy and brings happiness to everyone he meets. He loves going on walks, swimming, traveling, and spending time with friends. One of his favorite things to do is “drive” cars, and he’s always ready to hop behind a steering wheel to pretend he’s going on an adventure.
He attends kindergarten every day and goes to therapy with excitement and dedication. He sees specialists for rehabilitation, occupational therapy, and speech therapy. Everyone who works with him sees how much strength and motivation he has. They don’t just help him, they admire him.
Over time, Ivo has learned so much. He can say words like “yes,” “no,” “mom,” “dad,” “grandma,” “grandpa,” “bye,” and “Na,” which is short for Nicole, his sister’s name. He can crawl on his elbows like a soldier, tell his parents when he needs the toilet, and even take supported steps when someone helps him stand. These are big achievements, and his family celebrates each one.
Every day with Ivo is an adventure filled with laughter, games, hugs, and love. Victoria feels proud and grateful to be his mother. She believes that one day, there will be a cure for leukodystrophy, and that all children like Ivo will have the chance to enjoy happy, carefree childhoods.
