Updated: August 7, 2021 7:45:08 am
A PUNE couple has taken to crowdfunding to cover the expenditure of Rs 16 crore for Zolgensma therapy for their 16-month-old daughter, who is suffering from spinal muscular atrophy (SMA) type 1.
“The process of daily physiotherapy is so painful. I feel so helpless to see Anvi cry throughout the 45-minute session,” said the toddler’s mother Aarti Wavhal (28), a resident of Pimpri-Chinchwad.
The medical condition prevents the child from doing basic activities like moving, eating, breathing and swallowing.
Aarti, along with her husband Suraj Wavhal, is aiming to collect the whopping sum from ImpactGuru.com. “We have been able to raise Rs 33 lakh so far,” said Suraj (32).
According to doctors, the symptoms of SMA type 1 may vary from case to case. However, for children younger than two years, there could be benefit from gene replacement therapy where a one-time intravenous infusion of a drug (Zolegnsma) may help replace a missing or a faulty SMN1 gene with a functioning one.
“We belong to a middle-class family and cannot afford the expensive treatment. The state and the Centre must take note of these disorders and help the patients. It is not just the cost of the therapy, but a huge emotional toll on the family that cannot bear to see their only child unable to sit or stand up,” Suraj added.
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