A family from the Moscow region is living with osteogenesis imperfecta, a rare genetic disorder causing extreme bone fragility. The condition affects Yaroslav, his sister Vika, and their mother Natalia, significantly impacting their daily lives. Despite the challenges, the family finds support and strength through community and adapted activities.

Yaroslav experienced multiple fractures from a young age, initially leading to suspicion of abuse before being diagnosed with osteogenesis imperfecta at nine years old. This condition, often called “brittle bone disease,” results from a gene mutation affecting collagen production, making bones susceptible to breaks even from minor incidents. His sister Vika later received the same diagnosis after fracturing her spine, and their mother Natalia discovered she had a mild form of the disease, explaining her own childhood fractures.

The disease manifests differently among family members. Vika, 11, lives with constant fear of fractures, limiting her outdoor activities. Yaroslav, 13, faces challenges at school due to his condition. Their mother, Natalia, recalls the difficulty of obtaining a diagnosis and the common misconceptions surrounding the disease.

Despite the challenges, the family actively seeks ways to manage their condition and live fulfilling lives. They participate in bone-strengthening therapy and swimming. Vika dreams of becoming a chef, and Yaroslav hopes to “live normally.” The family finds solace and support in a specialized camp organized by the “Fragile People” foundation, where they connect with others facing similar challenges.

The “Fragile People” foundation aims to combat fears and provide assistance to individuals with osteogenesis imperfecta. The camp offers children opportunities for development and parents a supportive community. The family’s story highlights the importance of early diagnosis, medical care, and community support in navigating life with this rare genetic disorder.