Kolkata: City-based father is raising funds for his 12-year-old daughter Debosmita who is suffering from Spinal Muscular Atrophy Type 2 (SMA – 2). Debashish (Debosmita’s father) has turned towards crowdfunding platform ImpactGuru.com to raise INR 10 Crores for her treatment, says a press release.
Hypotonia, a side effect of SMA has weakened Debosmita’s muscles and dislocated her hips. She faces breathing complications and needs BiPap (non-invasive ventilator) support at night. With more than 80% locomotor disability, she needs constant care for her day-to-day needs.
A year ago, she had major spine surgery to correct scoliosis, the abnormal curvature and twisting of the spine. Now, her best hope to improve her relatively normal life and to stop disease progression is Risdiplam, the only drug that is approved by India Government for this disease that costs INR 72 lakhs annually.
One shot of Risdiplam infused in the vein of a child above 3 years of age…