18-Month-Old Aditri Fights for Life After Year on Ventilator

Aditri, an 18-month-old girl from Rajarhat, has spent over a year on a ventilator at the Institute of Child Health (ICH) in Kolkata, battling a rare genetic disease known as spinal muscular atrophy (SMA), type 1. This aggressive form of SMA leads to progressive muscle weakness, significantly affecting her ability to breathe, swallow, and feed. Aditri was diagnosed with the condition when she was just two months old.

While there is currently no cure for SMA, a one-time gene therapy known as Zolgensma could offer a path to improved quality of life for Aditri. The treatment, however, comes with a staggering price tag of ₹9 crore, which her family cannot afford. Aditri’s father, Subinay Mondal, a small-time fish trader, expressed the family’s desperation, saying, “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.”

In the meantime, Aditri is receiving Rispiplam, an oral medication provided free of charge from SSKM’s Centre of Excellence for Rare Diseases. This drug helps increase a protein that is deficient in those with SMA. Each vial of Rispiplam costs approximately ₹6 lakh, highlighting the immense financial burden placed on the family.

Aditri has faced additional health challenges, including a severe adenovirus infection, which she managed to overcome despite suffering significant lung damage. Her pediatric intensivist, Prabhas Prasun Giri, who oversees the Pediatric Intensive Care Unit (PICU) at ICH, remains hopeful. “Her brain function is normal, and we do not want to lose hope,” he said. “Even as time is running out, we still want to offer her a chance at life if we get the gene therapy medicine.”

To address the financial challenges faced by Aditri and four other children from Bengal suffering from SMA, a crowdfunding initiative was launched several months ago. The family has accrued a hospital bill of approximately ₹50 lakh for Aditri’s 12 months of treatment on a ventilator at ICH. Despite the escalating costs, Subinay noted that the hospital has not pressured them to settle the bill, which has provided some relief during this difficult time.

Local Member of the Legislative Assembly (MLA) Tapas Chatterjee has also contributed to raising funds for the gene therapy. Yet, Subinay emphasized the limitations of individual contributions, stating, “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.”

As Aditri continues her fight for life, her family and medical team remain committed to exploring every available option to improve her condition. The urgency for financial support and awareness surrounding SMA is critical, as the window for effective intervention is rapidly closing.