Minor child suffering from spinal muscular atrophy gets fresh lease of life on PM Modi’s birthday


A foreign company decided to donate an injection worth Rs 16 crore, which is needed to save the child from the life-threatening disease, in a raffle.

On September 17, the Sultanpur boy’s family asked BJP MP from Kaiserganj Brij Bhushan Singh for financial support. (Representative Photo)

HIGHLIGHTS

  • Spinal muscular atrophy (SMA) is a genetic condition.
  • Its treatment requires a drug called Zolgensma.
  • The average cost of the drug is Rs 16 crore.

An underage boy from Gonda, suffering from a deadly chronic disease called spinal muscular atrophy, was given a new life on the same day as Prime Minister Narendra Modi’s birthday on September 17, after a foreign company decided to donate an injection worth Rs 16 crore donate what was needed to save the child from the life-threatening illness in a prize draw.

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Spinal muscular atrophy (SMA) is a genetic disorder characterized by weakness and wasting (atrophy) of the muscles used for movement. It is caused by a loss of specialized nerve cells called motor neurons that control muscle movement.

According to online fundraising platform Impact Guru, a child with SMA will show symptoms before the age of six months. They usually have difficulty breathing, eating, swallowing, and even supporting their head. A child affected by SMA will have difficulty walking, standing, or crawling properly. If left untreated, 95% of these children die before the age of two.

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Treating SMA is very expensive and requires a drug called Zolgensma — a single dose that can be given to children under the age of two.

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The cost of a dose of Zolgensma is around Rs. 16 to Rs. 20 in various companies, an expense most families in India cannot afford. The drug has to be imported from the US as it is not manufactured in India.

On September 17, Sultanpur boy’s family reached Bishnoharpur in Nawabganj bloc in Gonda district of Uttar Pradesh and approached Kaiserganj BJP MP Brij Bhushan Singh for financial support. The MP asked the couple to reach out to people on social media for help.

While the family spoke to Singh at his home, the underage boy was chosen to receive the costly injection for free through a raffle run by a foreign company. The joy knew no bounds after the child’s mother received the information.

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Speaking to a gathering in Karnailganj, MP Singh said the family came to him from Sultanpur and asked him to bless the boy by putting his hand on his head and taking a picture. “I just remembered Modi ji (Prime Minister Narendra Modi) with all my heart and within two minutes a miracle happened. A foreign company decided to give the child the injection through a lottery…this is the greatest gift from Modi ji’s birthday.”

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