Delhi CM Kejriwal Meets 18-Month-Old Boy Suffering From Rare Genetic Disease | American company gave injection of Rs 17.5 crore for Rs 10.5 crore, India removed the duty

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  • Delhi CM Kejriwal Meets 18 Month Old Boy Suffering From Rare Genetic Disease

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CM Arvind Kejriwal arrived to know the condition of a child suffering from the world's rarest disease.  - Dainik Bhaskar

CM Arvind Kejriwal arrived to know the condition of a child suffering from the world’s rarest disease.

An 18-month-old child living in Delhi has received an injection worth Rs 17.5 crore. He is suffering from the world’s rarest disease Spinal Muscular Atrophy (SMA). For this the child had to get an injection worth Rs 17.5 crore, which was not available in India. This injection was ordered from America. The American company gave an injection of Rs 17.5 crore for only Rs 10.5 crore. India also removed the duty imposed on it.

Money was raised through crowd funding, AAP leaders helped
Money was raised through crowd funding for the child’s injection. Apart from this, Aam Aadmi Party MPs Sanjeev Arora and Sanjay Singh also helped in collecting money. After the injection, Chief Minister Arvind Kejriwal went to the child’s house and inquired about his well-being.

The child has received an injection worth Rs 17.5 crore.  CM Kejriwal said that now his condition is improving.

The child has received an injection worth Rs 17.5 crore. CM Kejriwal said that now his condition is improving.

Only one child out of 10 thousand suffers from this disease.
The name of the child from Najafgarh, Delhi is Kanav Jangra. His father says that the child had no movement in his legs. This problem was increasing gradually. The disease reached the stomach. When the investigation was done at Sir Ganga Ram Hospital in Delhi, it was found that the child had a rare disease. Its name is SMA-1 i.e. Spinal Muscular Atrophy Type 1. This is a disease which is found in one out of ten thousand children in the world.

This is a genetic disorder in which nerve cells are affected. These nerve cells affect motor neurons. Due to this the muscles become weak and movement reduces. Apart from this, digestion process is also affected.

Only 9 cases of SMA-1 in India
CM Kejriwal met the child’s family on Tuesday. He said that there are only 9 such cases in India. This is the first case in Delhi. Kejriwal further said that Kanav’s condition is improving after the injection. He can sit now. A lot of improvement is being seen in his legs.

Also read this health related news of Dainik Bhaskar…

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