Indore (Madhya Pradesh): A poignant observation by the Indore Bench of the Madhya Pradesh High Court during the hearing of a plea seeking financial assistance for a three-and-a-half-year-old girl suffering from a rare genetic disorder has drawn attention to the challenges faced by families battling costly rare diseases.
Hearing a petition related to the treatment of Anika, a resident of Indore's Dwarkapuri area who is suffering from Spinal Muscular Atrophy (SMA) Type-2, the court orally asked the state government's counsel, “Is this child not a Ladli Behna?”
The remark came after advocates Chanchal Gupta and Lakhan Sharma argued that while the state provides monthly financial assistance of Rs 1,500 to more than 1.25 crore women under the Ladli Behna Scheme, a reduction of just Rs 2 per beneficiary for one month could generate enough funds to meet the remaining cost of Anika's treatment.
According to the petitioners, Anika requires Zolgensma, a gene therapy considered among the world's most expensive medicines, costing nearly Rs 9 crore.
The family has already raised around Rs 8 crore with the support of social organisations, donors and well-wishers, but continues to struggle to arrange the remaining amount.
The High Court did not pass any immediate order and posted the matter for further hearing on June 22.
Anika has been battling SMA Type-2, a rare and progressive neuromuscular disorder that causes severe muscle weakness and affects mobility.
Her condition has become increasingly critical, with family members stating that she has been surviving on a liquid diet for several months.
