Four children battling rare disease seek government support:Family say poverty and biometric failures blocking ration and disability benefits

A heartbreaking case of a rare genetic disorder has emerged from Rewa district, where four children from the same family are being forced to spend most of their lives inside dark rooms because they cannot tolerate sunlight. The children belong to the family of Sugriv Kori, a resident of Devkhar village in Koriyan Tola under Jawa tehsil. The rare condition has not only affected the colour of their skin and hair but has also severely weakened their eyesight. At an age when children normally attend school and play outdoors, these siblings are struggling to step outside in daylight. Read the report… White hair and skin lead to social isolation The four children — Anamika (5), Riya (9), Priyanshu (13) and Pushpendra (10) — have completely white hair and extremely pale skin since birth. Family members say the children are often mocked by people in the village, who reportedly call them “English people” or “foreigners” because of their appearance. According to the children, people laugh at them whenever they go outside, which has deeply affected them mentally. Out of fear and embarrassment, they now avoid interacting with others and rarely leave their house. The children also face severe physical difficulties. Exposure to bright sunlight or strong artificial light causes intense burning and irritation in their eyes. Their eyes reportedly shut automatically in sunlight, and they often lose balance and fall while trying to walk outdoors. Medical experts suspect albinism According to medical experts, the symptoms displayed by the children point towards albinism, a rare inherited genetic disorder. In people suffering from albinism, the body is unable to produce sufficient amounts of melanin — the pigment responsible for giving colour to the skin, hair and eyes. Due to the lack of melanin: Doctors say such patients often require lifelong medical care, protective measures and vision support. Family struggling with poverty and system failures Apart from battling the disease, the family is also facing financial hardship and administrative difficulties. Biometric verification problems blocking ration benefits According to the family, the children’s fingerprints and retina scans are reportedly failing to match on biometric machines because of the disorder. As a result, their identity verification remains incomplete, preventing activation of their ration card on the government portal. The family says this has created major difficulties in accessing subsidised food supplies. Disability benefits yet to be approved Despite the children’s severe physical limitations, the administration has not yet issued disability certificates for them. Because of this, the family is unable to access: The family says they have repeatedly sought help but have received little support so far. Mother says treatment at major hospitals is unaffordable The children’s mothers, Maya Kori and Manju Kori, said through tears that the family survives on daily wage labour, making it extremely difficult to afford treatment at major hospitals. They said the children want to study, but they struggle to read because letters in books appear blurred. Authorities promise medical support Health officer Dr. Yatnesh Tripathi said the case appears to involve a genetic disorder and that a team of specialist doctors would be sent to conduct detailed medical examinations. He added that appropriate treatment and assistance would be arranged, and the matter would also be brought to the attention of the state government. District Collector Narendra Suryavanshi described the matter as “serious and sensitive” and said a special health department team would be dispatched immediately to provide necessary assistance and support to the family.