Delhi High Court Seeks Government Response on Funding Plea for 3-Year-Old's Rare Disease Treatment

A Delhi court is reviewing an urgent plea from the family of a 3-year-old girl suffering from an extremely rare genetic disorder, who requires a life-saving bone marrow transplant.

The girl, identified as Baby Sanskriti Bhagat alias Saanchi, has LRBA deficiency, a condition that severely compromises her immune system, leaving her vulnerable to recurrent infections and autoimmune complications. Her family has approached the Delhi High Court, seeking immediate government financial aid for the haploidentical bone marrow transplant and subsequent post-operative care, estimated to cost around ₹40 lakh.

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The petition seeks directions to the Ministry of Health and Family Welfare to sanction and release the entire amount required for the child's haploidentical bone marrow transplant and post-operative treatment directly to Apollo Hospital, Chennai, where the procedure has been recommended.

The family's petition highlights a long and arduous medical journey, with the child experiencing severe anemia and recurring fevers since infancy. After extensive consultations and tests, the diagnosis was confirmed in 2025. Specialists at Apollo Hospital in Chennai recommended the bone marrow transplant as the only curative option, with her father serving as a half-matched donor since a fully matched donor could not be found.

Represented by advocates Ashok Agarwal and Anuj Aggarwal, the family argues that any further delay in securing funds could be fatal for the child. They have requested the court to direct the Ministry of Health and Family Welfare to release the full amount directly to Apollo Hospital, ensuring the treatment commences without further postponement. The court has issued a notice to the Union Government, requesting a response by June 8.

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The child, Baby Sanskriti Bhagat alias Saanchi, suffers from LRBA (Lipopolysaccharide-Responsive Beige-Like Anchor Protein) Deficiency, an extremely rare genetic disorder that severely compromises the body's immune regulation mechanism, leaving patients vulnerable to recurrent infections and serious autoimmune complications.