A family from the West Kazakhstan Region is facing a double tragedy as both of their sons battle severe illnesses. The eldest, 11-year-old Amir, requires an expensive medication to combat Duchenne muscular dystrophy, reports infohub.kz.

The boys' mother, Yulia Dzhaletova, said her pregnancy with Amir was normal until the seventh month, when she developed cholestasis of pregnancy. Amir was born in October and developed like any healthy child. However, in 2016, before a hepatitis vaccination, blood tests revealed elevated ALT and AST levels. Doctors at the time did not explain the seriousness of the situation, and the boy was treated for hepatitis of unknown origin.

The parents sought specialists in Almaty and underwent tests, including a genetic analysis for Duchenne muscular dystrophy, which came back negative. Later, it turned out that the test only covered a few exons, not the full gene sequence, so the disease went undetected. Over time, Amir found it increasingly difficult to climb stairs. In 2025, the family moved to Tashkent, where the boy underwent a full examination and a repeat genetic test using whole-genome sequencing. It was then that the diagnosis of Duchenne muscular dystrophy was confirmed.

Amir began hormone therapy and rehabilitation. But this year, the family faced another tragedy: their younger son, Alikhan, was diagnosed with stage 4 nephroblastoma. The boy is now undergoing treatment in St. Petersburg, where he had a tumor and a kidney removed. Chemotherapy and radiation therapy lie ahead.

Yulia said the family is currently split: her husband works in Tashkent, the middle son is with him, Amir is staying with his grandmother, and she is in St. Petersburg with her youngest son, fighting for his life every day. She admits she has to be strong for everyone, but she cannot forget about Amir either. With Duchenne muscular dystrophy, the disease gradually saps strength, and each year it becomes harder for the boy to perform everyday actions. There is a chance for Amir to receive gene therapy with an expensive drug that could slow the disease's progression and preserve his abilities.

However, the cost of the drug is beyond the family's means, so the parents are forced to ask for help. Yulia appeals to all compassionate people to help her son get a chance at a future, to keep the ability to walk, live a full life, study, and dream.

Bank details for donations: Kaspi: 4400 4303 1309 3541, Halyk: 4405 6397 3868 4164, Yulia D. Phone: +7 706 620 62 27, Instagram: @save_amir.b