Hyderabad: Recently, a Hyderabad-based couple managed to raise Rs 16 crore in three-and-a-half months from 65,000 donors through crowd-funding to buy the world’s costliest medicine for treating their three-year-old son Ayaansh Gupta suffering from a rare disease called Spinal Muscular Atrophy (SMA).
Now, another similar case has appear in the city. Four-year-old Saanvi is suffering from SMA type-3, a lethal disease, which reduces a child’s life expectancy to 4-5 years.
Saanvi often used to get ill and feel tired the entire time. Her neck would keep falling to the side or behind. She faced difficulty in walking and standing too. Her head movement and growth were unusual. A series of tests were taken and informed that the child was suffering from SMA. We absolutely had no idea about it earlier,” says Doshili Shilpa, Saanvi’s mother.
SMA is a genetic disorder in which one defective gene causes muscle weakness and degenerates its normal functions.
The biggest obstacle in the treatment of SMA is the high cost of the medicines. Saanvi, the resident of Kachiguda, would need a drug named Zolgensma, which is only sold in the United States and costs Rs 16 crores, besides the cost of another six crores for importing the drug.
“All treatment options are extremely expensive. Rs 16 crore is an unimaginably huge amount for us. So far we have spent Rs 1 lakh and we can afford around Rs 4 lakh through debts. We have taken to crowdfunding to cover the cost,” says Saanvi’s father Doshili Vinay, who works in a private company and earns not more than Rs 10,000 a month. He is the only member in the family to earn.
They are requesting to the government, the NGOs and people to contribute to treatment that could save Saanvi’s life. For contribution: Contact – Doshili Shilpa (9618779839).
