Confronting the Sun: Palak’s Courageous Journey

Palak was a lively, cheerful child whose laughter lit up her home and neighborhood. She loved playing outdoors, spending hours hopping around in games of hopscotch with her friends, her bright smile and giggles filling the air. But at the tender age of three, small white spots appeared on Palak’s skin, signalling the beginning of a heartbreaking journey. Her once-vibrant life took a painful turn as her condition worsened despite numerous visits to local doctors. Desperate for answers, Palak’s father sought help from various hospitals, but the treatments brought little relief. Palak’s diagnosis revealed a rare and cruel truth: she was suffering from Xeroderma Pigmentosum, a fatal genetic disorder that makes her skin extremely sensitive to sunlight. Tragically, Palak is not alone in this battle. Her two sisters, Aaliya (15) and Alisa (12), are also fighting the same disease, leaving the family grappling with unimaginable challenges. Palak’s father, a driver, works tirelessly to support his family of seven children—six daughters and one son. While he and his wife are healthy, the burden of caring for three children with this rare condition is overwhelming. The disease has robbed Palak of her childhood. Once a bright student, she can no longer attend school. Her vision has been severely affected, requiring multiple eye surgeries. To access the care Palak needs, the family must travel 550 kilometers for treatment, with a single CT scan costing ₹17,000. These expenses, combined with the ongoing medical treatments, have pushed the family into severe financial hardship. Palak’s mother, in an effort to support the family, sews clothes to make ends meet, but it’s never enough. This family’s struggle highlights the immense challenges faced by those living with rare diseases: the crushing medical costs, the emotional strain, and the constant uncertainty about the future. Palak and her family need your help to continue this fight. Your support can bring hope and relief to a family that has endured so much. Content by: Miss Vrunda Tukadiya - ORDI Volunteer