Delhi Chief Minister Visits Boy with SMA

 

₹17.5 crores—or $2,102,128. That’s the cost of medication for a young boy named Kanav, who lives in Najafgarh, a town in the Southwest Delhi district. Kanav is living with a rare genetic disorder called spinal muscular atrophy (SMA). Caused by SMN1 gene mutations, SMA leads to mild-to-severe muscle weakness and atrophy as motor neurons are lost. This can result in symptoms such as decreased or absent reflexes, poor muscle tone, difficulty swallowing and breathing, tremors, and the inability to sit, stand, or walk independently.

Kanav’s Experience with SMA

According to the Hindustan Times, Kanav’s parents participated in various crowdfunding opportunities to raise the funds needed to acquire the treatment. Additionally, they reached out to AAP MP Sanjiv Arora for assistance. People from all over, including various celebrities, donated money. The family believes that this support stems from people empathizing with their situation, especially considering that there are very few people in India diagnosed with SMA. In fact, Kanav’s case is supposedly the only known case of SMA within Delhi.

In the end, the family couldn’t raise the full ₹17.5 crores. However, the drug’s developer agreed to provide the drug to the family for ₹10.5 crores (approximately $1,261,518). This enabled the family to start Kanav’s treatment as quickly as possible.

Recently, Delhi’s Chief Minister Arvind Kejriwal visited Najafgarh to meet Kanav and his family. He spoke with the media to express his gratitude for all the politicians and other parties that came together for change. Kanav has been progressing well since beginning treatment. Now 18 months old, Kanav can sit up independently and move his arms and legs on his own. The family looks forward to witnessing Kanav’s sustained improvements over time and offers their gratitude for the support and care they have received.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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