In a heart-wrenching battle for survival, an 18-month-old girl in Kolkata continues her fight against a rare and aggressive genetic disorder, dependent on a ventilator for over a year. Aditri Mondal, diagnosed with Spinal Muscular Atrophy (SMA) Type 1, is in a race against time for a life-saving, one-time gene therapy that costs a staggering Rs 9 crore.
A Devastating Diagnosis and a Relentless Fight
Aditri's struggle began when she was merely two months old. Doctors at the Institute of Child Health (ICH) in Kolkata identified that she was suffering from Spinal Muscular Atrophy (SMA) Type 1, the most severe form of this genetic condition. SMA leads to progressive muscle weakness, severely impacting breathing, swallowing, and feeding. Tragically, without major medical intervention, most children with this condition do not survive beyond the age of two.
"Doctors said that the best time to give the gene therapy is within two years of age. As a small-time fish trader, the cost is beyond my reach. We want to try everything to save her," said her father, Subinay Mondal, a resident of Rajarhat. The family's hopes are pinned on Zolgensma, the world's most expensive drug, which offers a one-time gene replacement therapy that can dramatically improve quality of life and manage the disease.
Mounting Challenges and a Glimmer of Hope
While the family scrambles to arrange funds for Zolgensma, Aditri is receiving supportive care. She is currently on ventilation at ICH, where her bill for the last 12 months has accumulated to approximately Rs 50 lakh. "Despite the escalating cost, the hospital did not ask us to clear the bill, which is a huge help," Subinay acknowledged.
To manage her condition, Aditri is being given Risdiplam, an oral syrup that increases a protein deficient in SMA patients. This drug, which costs around Rs 6 lakh per vial, is being provided free of cost by the SSKM Hospital's Centre of Excellence for Rare Diseases. Her resilience was tested further when she contracted an adenovirus infection, but she fought through it despite severe lung damage.
"Her brain function is normal, and we do not want to lose hope. Even as time is running out, we still want to offer her a chance at life if we get the gene therapy medicine," stated Dr. Prabhas Prasun Giri, paediatric intensivist and PICU in-charge at ICH.
A Community's Effort and a Plea for Help
A crowdfunding initiative was launched months ago for Aditri and four other children from West Bengal suffering from SMA. Their local MLA, Tapas Chatterjee, has also stepped in to help raise funds. However, the target remains dauntingly high. "Our local MLA Tapas Chatterjee helped in raising funds for the gene therapy. But how much can one single person contribute for this expensive drug? We are still hoping for more people to come forward and help us save her," appealed Subinay Mondal.
The case highlights the critical need for accessible treatment for rare diseases in India and the immense financial burden it places on families. As Aditri's second birthday approaches, the window for the most effective treatment narrows, making every contribution crucial in her fight for a future.
