“Daily physiotherapy is so painful and I feel so helpless to see Anvi, my 16 month old daughter cry throughout the 45 minute session,” says 28 year old Aarti Wavhal, a resident of Pimpri-Chinchwad. Anvi is suffering from Spinal Muscular Atrophy (SMA) type 1 and Aarti along with her husband Suraj have sought help from crowdfunding platform ImpactGuru.com to raise a whopping sum of Rs 16 crore for the Zolegnsma therapy.
Anvi, a 16 month old girl is fighting against SMA type 1 (Spinal Muscular Atrophy) which prevents her from doing basic stuff like moving, eating, breathing, and swallowing. “We have been able to raise Rs 33 lakh so far,” 32 year-old Suraj said. The couple was heartbroken when they found out that their little girl had this disease.
According to doctors, symptoms may vary. However for children younger than two 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. The cost of the therapy is a whopping Rs 16 crore and Suraj is now raising money through crowdfunding and has raised over Rs 33 lakhs, the statement said.
“We hail from a middle class family and cannot afford Rs 16 crore . The state and central governments must take note of these disorders and help the affected patients. It is not just the cost of the therapy but takes a huge emotional toll on the family who cannot bear to see their only child unable to sit up or stand,” Suraj appealed.