Sunlight’s Enemy: Maninder Singh’s Battle Against Xeroderma Pigmentosum

Maninder Singh’s life has been a relentless battle against Xeroderma Pigmentosum, a rare genetic disorder that makes him dangerously sensitive to sunlight. His journey began in 1992 when he was just a young child, and since then, it has been marked by countless treatments, surgeries, and heartbreaking limitations. This cruel disease has left visible scars on Maninder’s skin, causing painful red spots, and has severely damaged his eyes. Over the years, he has undergone six surgeries and continues to receive treatment, including medications and immunological therapies, under the compassionate care of Dr. Radhika for the past 12 years. But the challenges didn’t stop there. The disease has progressed to stage 4 cancer, confining Maninder to his home and stealing his ability to work. He does what little he can to help his father run their small grocery store, but his health severely limits his involvement. The emotional and financial toll on the family has been devastating. They have already endured the heartbreaking loss of Maninder’s sister, who also suffered from this relentless disease. Watching her succumb to the same condition has left the family shattered, living under the constant shadow of fear and grief. Despite his struggles, Maninder applied for government support, but all he received was a disability card—no financial aid, no meaningful assistance. Maninder’s story is one of unimaginable hardship, but also of incredible strength and resilience. It shines a light on the daily battles faced by those living with rare diseases and the urgent need for better treatments, support systems, and awareness. Your kindness and support can make a world of difference for Maninder and his family as they continue to fight this uphill battle. Content by: Miss Vrunda Tukadiya - ORDI Volunteer