In the heart of Pune, Maharashtra, India, two brothers, Laxman Jadhav and Ramesh, ages 13 and 8, face an unusual and challenging reality. Born with a rare genetic disorder, the boys exhibit facial features that make them appear as if they were 80-year-old men. This condition, a severe vascular malformation, has not only garnered unwanted attention but has also left the boys dependent on a liquid-only diet, as they lack teeth.
The poignant story unfolds as Savita Jadhav, the 30-year-old mother of the two boys, shares her concerns and struggles. Having tragically lost one son in a previous accident, Savita now faces the potential loss of two more children due to this mysterious and debilitating disorder. Despite desperate attempts to seek medical help, doctors have been unable to provide a cure or even a comforting prognosis.
From a young age, Laxman and Ramesh experienced the physical manifestations of their disorder, with their heads deforming and faces aging beyond their years. Savita recounts the family’s journey of trying to find a solution, expressing the emotional toll it has taken on her. “I feel very sad and pained, but I don’t know what to do. I feel helpless before the pain they endure,” she shares.
Ankush Jadhav, the boys’ 37-year-old father, adds to the narrative, explaining how their lives have been far from ordinary. The boys cannot attend school, play outdoors, or befriend other children due to their health concerns. The local school even refused admission, fearing potential health risks. The family grapples with the emotional toll of social isolation, describing their home as a place where the boys live like prisoners.
Despite numerous efforts to seek medical advice and treatment, the family has received no definitive answers. Dr. Aayush Gupta, a physician at a Pune hospital, describes the boys’ condition as an extremely rare genetic disorder, limiting their lives significantly. He reveals that the medical community has reached out to experts in the United States and Germany but has yet to receive any guidance or solutions.
Currently leading isolated lives, devoid of friends and community acceptance, Ramesh and Laxman express their simple desire for normalcy. They share instances of neighbors discriminating against them, even labeling them as demons. The boys resort to covering their heads when going out, hoping to shield themselves from the hurtful comments and stares.
As the family navigates this challenging journey, their plea is for understanding, compassion, and the hope for a medical breakthrough that could provide these boys with a chance at a more normal life. The poignant story sheds light on the harsh realities faced by those living with rare genetic disorders and the profound impact it has on families seeking solace and support in a world that often misunderstands their struggles.
