Dear Friends,
Help Us to Save Our Baby Girl Anshika from SMA Type 1
My name is Bitapi, and I am not just writing this as a mother, but as a mother who is fighting every second for her daughter’s life. My baby girl, Anshika, is only 5 months old, and she is the centre of our world.
After 3 years of waiting and praying, Anshika came into our lives like a blessing. The day she was born was the happiest day of my life. Her soft cries, her tiny fingers, the way she looked at me, it was like our whole world lit up. I had dreams of watching her crawl, taking her first steps, calling me “Ma” for the first time.
The Day Everything Changed
Our world came crashing down when we received the heartbreaking news—Anshika 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 2.
The struggle against SMA that goes unnoticed
The only hope for our daughter’s survival is a one-time gene therapy drug 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 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.
The day my husband, Animesh and I got the news of Anhsika’s diagnosis, I felt like the ground had slipped beneath us. How could this happen to our little angel? Every day, I watch her struggle to lift her head or cry without strength, and as her mother, it breaks me in ways I can’t even describe.
I try to smile in front of her. I sing to her, I hold her close and whisper that everything will be okay. No mother should have to watch her child suffer like this, knowing that help exists, but is just so far out of reach.
We Need Your Help to Save Our Baby
Today, as a mother, I ask you to please save Anshika. We cannot do this alone. Your support, no matter means the world to us. It brings us closer to hope, to healing, to life for our daughter.
Follow Our Journey and Stay Connected
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 want our daughter to become an IAS, and we are fighting for our daughter's future every day. Your support is invaluable. We kindly request that you continue to help us spread the word and support our campaign as we strive to reach our goal.
As a mother, all I want is to see my daughter grow up, laugh, play, and go to school. I dream of seeing her wear a uniform one day and call me after her first class. Please help us make that dream come true.
Donate now and be a part of Anshika’s fight for survival.
With heartfelt gratitude,
How to help:
Donate: Click on the ‘Donate Now’ and help Anshika get Zolgensma® (onasemnogene abeparvovec)
Share: Share Anshika’s story to help further.
कैसे मदद करें:
दान करें: 'अभी दान करें' पर क्लिक करें और वृद्धि को ज़ोलगेन्स्मा प्राप्त करने में मदद करें।
साझा करें: आगे मदद के लिए वृद्धि की कहानी साझा करें।
Disclaimer -
SMA is a progressive disease that causes Anshika's muscles to weaken over time. To prevent further deterioration and slow the progression, Anshika urgently needs the drug Risdiplam to preserve muscle function only if it is prescribed by the doctor, While the fundraising for Zolgensma is underway, starting Risdiplam immediately is a critical step to safeguard the child’s life and preserve muscle function.
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.