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Family Living with Rare Genetic Bone Disease Featured in Video

A family in Russia is sharing their experiences living with osteogenesis imperfecta, a rare genetic disorder also known as brittle bone disease. The condition, diagnosed in a young boy named Yaroslav after multiple unexplained fractures, affects his bones, making them prone to breaking even from minor injuries.

Yaroslav’s diagnosis came after years of searching for answers, beginning when doctors initially suspected child abuse due to a skull fracture at just three months old. Subsequent fractures, including a broken leg while sitting in a playpen, prompted further investigation and, eventually, the correct diagnosis at age nine.

Later, Yaroslav’s younger sister, Vika, and their mother, Natalia, were also diagnosed with osteogenesis imperfecta. Vika suffered a spinal fracture from a fall and required a corset for six months. Natalia recalled experiencing ten fractures during her own childhood, but her condition was not recognized at the time.

Despite the challenges, the children attend a regular school and have aspirations for the future. Vika hopes to become a chef, while Yaroslav simply wishes to live a normal life.

The family finds support through a camp for people with brittle bone disease, where children feel safe and parents receive guidance. Organizations like the “Fragile People” Foundation and the “Help is Near” project assist families affected by this rare condition.