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 has the potential to stop the rapid clock of muscle atrophy (weakening and shrinking) in the body and restore the lost functions over time.
“We had received great support from the donors during her spine surgery and we are eternally grateful to every single donor who has helped us keep my child safe from the clutches of this disease. Every contribution has allowed Debosmita to take a small step forward in regaining her childhood,” said Debashish, Debosmita’s father.
Spinal Muscular Atrophy – Type 2 or SMA-2 is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons). Without treatment, the progressive muscles become weak and eventually restrict any muscular movement including digestion, the beating of the heart muscle and lungs, and even the movement of the limbs.
“We are trying to raise funds to continue treating Debosmita with Risdipalm. Your contribution will help save her life, please open your heart, and donate,” appealed Debosmita’s father.
The raised amount (Fundraiser Link: https://www.impactguru.com/fundraiser/help-debosmita) on Impact Guru, an online medical fundraising platform, will be used for the ongoing treatments of Debosmita and for future doses of Risdiplam.