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Child's Rare Disease Needs Rs 40 Lakh Transplant
2 Jun
Summary
- Three-year-old Delhi girl needs Rs 40 lakh for bone marrow transplant.
- Rare genetic disorder LRBA deficiency impacts child's immune system.
- AIIMS Delhi stated it lacks facilities for the required specialized treatment.
A three-year-old girl from Delhi, identified as Baby Sanskriti Bhagat, is urgently seeking financial aid for a bone marrow transplant to treat LRBA deficiency, a rare genetic disorder. The life-saving procedure is estimated to cost up to Rs 40 lakh, a sum the family cannot afford.
Suffering from recurrent fever and severe anemia since infancy, the child underwent extensive testing which revealed the rare immune system disorder. Specialists at Apollo Hospital have recommended a bone marrow transplant as the only curative option. However, AIIMS Delhi informed the family that it does not possess the required facilities for this specialized treatment.
The child's father has approached the Delhi High Court, highlighting that his savings have been depleted by diagnostic and initial treatment costs. The family is seeking financial assistance from the Union government under the National Policy for Rare Diseases. An advocate representing the petitioner argued that denying aid for treatment at a private facility would undermine the policy's core purpose of saving lives.
