11-month-old dies, even after parents spent Rs 16 crore on SMA treatment in Maharashtra

Eleven-month-old baby, Vedika, who was suffering from Spinal Muscular Atrophy and was administered Rs 16 crore injection - Zolgensma, a gene therapy medication to treat SMA, passed away on Sunday evening.

Pune:Eleven-month-old baby, Vedika, who was suffering from Spinal Muscular Atrophy (SMA) and was administered Rs 16 crore injection - Zolgensma, a gene therapy medication to treat SMA, passed away on Sunday evening. She was administered with the injection in June.

Zolgensma, a single-dose intravenous injection gene therapy in which the defective SMN1 gene is replaced through an adenoviral vector, is currently not available in India and has to be imported from the United States.

The disease progressively destroys nerve cells in the brain stem and spinal cord that control speaking, walking, breathing, and swallowing and is caused due to a defect in the SMN1 gene.

The affected children develop muscle weakness involving upper and lower limbs initially, but over time develop breathing difficulty and swallowing difficulty.

SMA affects one in 10,000 children generally, and there are nearly 800 children suffering from SMA in India currently, and thrice as many children die before they even reach their second birthday.

READ:Infant who needed Rs 16 crore injection dies

Vedika's parents had restored to crowdfunding to raise money for her treatment after she was diagnosed with SMA TYPE 1 when she was 8 months old.

Earlier, a six-month-old girl, Noor Fatima from Rajasthan's Bikaner district, who was suffering from SMA, died, as her parents couldn't afford to get the Rs 16 crore Zolgensma injection.