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Sharmili Mallick

Rourkela: A 14-year-old boy Vedanta from the Steel City of the State who has been struggling for existence due to a rare genetic neuromuscular disorder has sought help from Prime Minister Narendra Modi for the treatment.

The only son of Vivek Lal and Priti of Civil Township area in Rourkela, Vedanta is suffering from Spinal Muscular Atrophy (SMA)-- a rare condition which has led to a breakdown of nerve cells in his brain and spinal cord due to which he is not able stand, walk and control his movements.

A Class VII student of Delhi Public School, Vedanta is a bright student and hard working. However, his health condition has made him helpless.

Though Vedanta's parents Vivek and Priti have been managing money for his treatment since his birth but their son now needs a surgery to be cured, which will cost in crores. The treatment includes the cost of the medicine worth a whopping Rs 14 crore which has to be imported from the United States.

Unable to raise the money for his surgery, Vedanta's parents have appealed Prime Minister Narendra Modi to help them in arranging the treatment as well as exempt the import duty of the medicines.

Vivek's mother Priti said, "This disease weakens the muscles of the body and the survival chances of children suffering from Type 1 is very less. Vedanta is only being given physiotherapy now and no medicines have been prescribed for him. There is no particular treatment for SMA in India. I appeal the government to make arrangements for SMA's treatment in the country," she added.

"The cost of the medicines is around Rs 12 crore. Besides, the treatment is not available in India which makes the entire surgery very expensive. There are many kids in the country who are suffering from the rare disease and I therefore, request the government to manufacture the medicines for the disorder in the country which will make the treatment affordable," said Vedanta's father, Vivek.

It may be noted that PM Modi had recently waived off Rs 6 crore as a GST amount against Rs 16 crore of imported medicines required to treat a six month-old girl of Mumbai, Teera Kamat, who is also suffering from the same rare genetic disorder.

(Edited By Suryakant Jena)

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