The parents of one-year-old Aakriti, diagnosed with Spinal Muscular Atrophy (SMA) type 1, have written an open letter to Maharashtra Deputy Chief Minister Devendra Fadnavis, requesting his intervention to provide financial assistance to continue her treatment. Aakriti was fortunate to have received a life-saving oral drug, which is otherwise exorbitantly priced through a promotional campaign undertaken by an MNC pharma company at KEM hospital, six months ago. But Aakriti will not be able to continue the life saving treatment, due to lack of funds under the National Policy for Rare Diseases.

Her parents have time till the end of this month to arrange for Rs 34 lakh for all the doses in 2024 or Rs 12 lakh for the doses in the next six months. The cost of the medication increases with the weight of the child. According to her parents, the drugs have improved her condition in the last six months as she is able to sit or roll by herself, which was not the case before. Her parents fear that if she is unable to continue to get the treatment she might be exposed to further complications and threat to life.