Madhya Pradesh Infant Battles Rare Disease, Family Seeks Rs 9.4 Crore For Treatment
Family appeals for urgent financial assistance from authorities, for newborn suffering from Spinal Muscular Atrophy needing an expensive imported injection.
Published : April 4, 2026 at 4:01 PM IST
Mandsaur: A newborn girl in Garoth town of Madhya Pradesh has been diagnosed with a rare and life-threatening genetic disorder, putting her life at risk. The child, the only offspring of the family after many years of trying, is suffering from Spinal Muscular Atrophy (SMA), a severe condition for which treatment is not readily available in India.
Doctors have said that her life can be saved with a specialised injection imported from the United States (US), costing around Rs 9.40 crore. The financially struggling family has appealed to Prime Minister Narendra Modi and Madhya Pradesh Chief Minister Dr Mohan Yadav for help.
Infant Facing Breathing Difficulties
The infant, Srishti, from Garoth in Mandsaur district, began showing unusual symptoms shortly after birth. She is about 1.5 months old. Soon, the family noticed that she had difficulty breathing, feeding and even lifting her head. Concerned, they consulted doctors in Indore (Madhya Pradesh) and Kota (Rajasthan). After multiple tests, doctors confirmed that the child is suffering from SMA, a rare and serious genetic disorder.
Costly Injection Not Available in India
Pediatric specialist Dr Priyanshu Mathur from Jaipur advised that the injection must be administered before the child turns two years old. The father, Anil Soni, earns a living repairing bicycle and motorcycle punctures with his son. The family does not have the financial means to afford such an expensive treatment.
Family Appeals For Help
Anil has appealed to the PM and the Madhya Pradesh CM for financial assistance. He said the child was born after many years of prayers, bringing immense joy to the family, but the diagnosis has left them devastated. He added that, given their modest income, arranging such a large amount for treatment is impossible.
Government Urged to Step In
The family urgently calls on the government to intervene and provide immediate financial support to save their daughter's life. They stress that timely assistance from authorities can make a life-saving difference, aligning with the spirit of initiatives like "Beti Bachao". They urge officials to act swiftly to give the child a real chance at survival.
Rare Disease Explained
Doctors said that this condition is extremely rare, affecting approximately 1 in 10,000 children. SMA Type 1 impacts motor neurons in the spinal cord, leading to severe muscle weakness. It affects movement, breathing, feeding, and overall physical activity.
Currently, there is no complete cure for the disease, but early treatment with the Zolgensma injection can significantly improve survival chances.
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