Minor child suffering from spinal muscular atrophy gets fresh lease of life on PM Modi's birthday
India Today
A foreign company decided to donate an injection worth Rs 16 crore required to save the child from the life-threatening disease as part of a lucky draw.
A minor boy from Gonda suffering from a deadly chronic disease called spinal muscular atrophy got a fresh lease of 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 required to save the child from the life-threatening disease as part of a lucky draw.
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.
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The treatment of SMA is very expensive and requires a medicine called Zolgensma--a one-time dose, which can be administered to children below the age of two years.
The cost of one dose of Zolgensma is approximately Rs 16 crores to Rs 20 crores in different companies, an expenditure most families in India cannot afford. The drug has to be imported from the US since it is not manufactured in India.
On September 17, the boy's family from Sultanpur reached Bishnoharpur in Nawabganj Block in Gonda district of Uttar Pradesh and approached BJP MP from Kaiserganj Brij Bhushan Singh for financial assistance. The MP asked the couple to appeal to people on social media to help them.
