Spinal muscular atrophy (SMA) is a genetic disorder characterized by weakness and wasting (atrophy ) in 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 starts showing symptoms before the age of six months. They usually have difficulty breathing, eating, swallowing and also supporting their head. A child affected by SMA will find it difficult to walk, stand or crawl properly. If untreated, 95% of such children lose their lives before they turn two-years-old.
SMA must be treated with the extremely expensive drug Zolgensma, which can be given to children as young as two years old in a single dose.
Most Indian families cannot afford the price of one dose of Zolgensma, which ranges from Rs 16 crores to Rs 20 crores depending on the company. Since the medicine is not produced in India, it must be imported from the US.
The family of the child , who were from Sultanpur, travelled to Bishnoharpur in Nawabganj Block in the Gonda district of Uttar Pradesh on September 17 and asked BJP MP Brij Bhushan Singh of Kaiserganj for financial support. The MP advised that the couple use social media to ask for assistance.
The young kid was chosen in a lucky draw run by a foreign company to receive the expensive injection free of charge while the family was speaking with Singh at his home. The mother of the child was overjoyed when she learned the news.
MP Singh said the family had gone to him from Sultanpur and wanted him to bless the child by laying his palm on his head and snapping a picture while speaking to a crowd in Karnailganj. "A miracle occurred in less than two minutes after I simply thought about Modi ji (Prime Minister Narendra Modi). This is the biggest gift on Modi ji's birthday—a foreign company agreed to inject the child via lottery."
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