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I, Animesh Mandal, Lecturer in Electrical Engineering under the Department of Technical Education, Training and Skill Development, Government of West Bengal. But today I write to you as a father deeply concerned for my 4-month-old daughter, Baby of Animesh Mandal.
A Story of Hope
After three years of marriage, we were blessed with our beautiful baby girl, Baby of Animesh. Like any other parents, we were overjoyed to welcome our little angel into the world. She became the light of our lives, bringing immense happiness to our family. She was our bundle of joy, our little Lakshmi. But our happiness was short-lived.'
The Day Everything Changed
Our world came crashing down when we received the heartbreaking news—Baby of Animesh has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and life-threatening genetic disorder. SMA Type 1 is a progressive, rare genetic disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for breathing, eating, crawling, and walking. Without urgent treatment, most children with SMA Type 1 do not survive beyond the age of two.
The struggle against SMA that goes unnoticed
The only hope for our daughter’s survival is a one-time gene therapy called Zolgensma® (onasemnogene abeparvovec) engineered by Novartis, which can stop the progression of the disease. However, the cost of this life-saving gene therapy is tremendously high, approximately 2 million dollars. In India, some hospitals registered under the Zolgensma Early Access Request Program, the treatment would be provided by Novartis for around 1 million US dollars, i.e. approximately INR 9 Cr. As middle-class parents, this amount is beyond our reach, and we cannot save our daughter on our own.
Seeking Your Support
We are reaching out to you with folded hands, pleading for your support. Your contribution, no matter how small, can bring us closer to giving Baby of Animesh the treatment she desperately needs. Please come forward and help us save our little girl’s life. Every donation, every share, and every prayer counts.
Follow Our Journey on Instagram
Our daughter's progress will be updated on Instagram, where we'll share the latest updates, photos, and videos to keep everyone informed. We invite you to follow us at https://www.instagram.com/lifeof_anshika/ to stay connected. By following and sharing our content, we can increase our reach and our plea for support.
Expressing the emotional impact of this journey is difficult for parents. We dedicate ourselves to fighting for our daughter's future every day, and your support is invaluable to us. We kindly request that you continue to help us spread the word and support our campaign as we strive to reach our goal.
We want to express our gratitude from the bottom of our hearts for standing by us during this incredibly difficult time. As a team, we have the power to make a positive impact on our daughter's life.
Donate now and be a part of our daughter’s fight for survival.
With heartfelt gratitude,
How to help:
Donate: Click on the ‘Donate Now’ button and help our daughter get
Zolgensma® (onasemnogene abeparvovec)
