CNN Central News & Network-ITDC India Epress/ITDC News Bhopal: Vedansh Singh, a 22-month-old child from Maharashtra, has a rare genetic disorder called Spinal Muscular Atrophy (SMA) Type 1. It is a serious neuromuscular disease in which the motor neurons that control muscles are affected. This can cause muscle weakness, floppiness in the body, difficulty in sitting and standing, and, in severe cases, problems with swallowing and breathing.
Gene therapy has been recommended for Vedansh’s treatment. According to the report, the cost of his treatment is around Rs 9 crore. It was difficult for the family to arrange such a large amount. Social media influencer Mayuresh Gujar and his team ran a campaign for about a month to try to raise funds for the treatment. According to the report, around Rs 2.22 crore was collected during the campaign, and Anant Ambani assured support for the child’s treatment expenses.
Some gene-based therapies for SMA are extremely expensive. In the Government of India’s document on rare diseases, the estimated cost of gene therapy such as Zolgensma was stated to be around Rs 16 crore. The high price is attributed to factors such as the heavy cost of developing and manufacturing gene therapy, the limited number of patients, and the complexity of treatment. However, the suitability of treatment depends on the child’s age, the type of disease, and the medical condition. In such cases, consultation with a specialist doctor is necessary.
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