We Felt Every Bit of His Pain: A Family's Fight in Yugra

Amir is a sweet boy who is only three years old, but in his life he has gone through many trials due to serious illnesses. His medical records include complex diagnoses such as encephalopathy, West syndrome, and Klinefelter syndrome. They prevent him from living and developing fully. We tell the story of a special-needs boy from Khanty-Mansiysk.

The first signs that something was wrong were noticed by his parents when Amir was two months old. He would jerk chaotically throughout the day. It was frightening and did not resemble a typical tantrum. They consulted a doctor.

In February 2023, in Nizhnevartovsk, Amir was diagnosed with focal epilepsy. His parents began treating him, hoping the seizures would disappear, but the situation only worsened. Amir had up to a hundred seizures a day.

Many examinations showed that he has serious brain problems: an MRI detected atrophy, and an EEG showed hypsarrhythmia. Then doctors made a new diagnosis — West syndrome. This is a very severe form of epilepsy that hinders brain development and causes severe seizures. In October 2023, his parents managed to stabilize Amir«s condition and reduce the number of seizures, but, as it turned out, this was only the first step. The child still could not hold his head up, crawl, or speak for a long time.

«We felt every bit of his pain, every glance and desire, because he is our son. And we knew: he understands everything, it»s just the illness that prevents him from living as a child should,« recalls Guzel Biktimirova.

Unfortunately, in December 2024, the seizures returned. Doctors hospitalized the boy again. The seizures became slightly less frequent and weaker, but the brain problems remained. Then the family learned that there is a clinic in Moscow that helps the most severe patients. There, Amir was offered treatment for 587 thousand rubles (approximately $6,500 at current rates). His parents managed to raise this amount thanks to the help of relatives, friends, and kind people.

In January 2025, a ketogenic diet began — a special diet that helps reduce the number of seizures. Over six months, this treatment showed good results. Amir began to hold his head and back better, and his severe seizures disappeared. This meant that his brain started to develop and recover.

But to continue the progress, a new trip to Moscow is needed. The next course is scheduled for February 2026, and the cost of treatment and travel amounts to more than a million rubles (over $11,000 at current rates). Now the parents are raising money to help Amir go through another important stage.

This story shows that love and support help in the fight. The parents do not give up and believe that their son can grow up healthy and happy. Thanks to the help of others, Amir has already taken the first steps — he learned to hold his head and overcame the seizures, but he still needs treatment and care. Faith in the best and people«s help are what give him a chance for a full life.