December 30, 2021 5:21:44 pm
Today Manha blew a bubble from the saliva drooling out of her mouth. And then she began making a strange gurgling sound. Her lungs have become weaker after a severe bout of pneumonia. Every few hours Manha starts to choke. We have to put her on a nebulizer every time. Life has been tough for me. My husband and in-laws tortured me mentally and psychologically. They even threw me out in the middle of the night when Manha was still in my womb. Today, they don’t even ask how Manha is, knowing full well that her life is in great peril!
My father used all the savings he had to get me married. The little he had left, he had to use on my repeated hospital stay during the pregnancy. My father never let me feel the pinch of poverty. He has sown clothes night and day to get me educated and married. But luck didn’t support me. Even after I left my job as a teacher for their happiness and did all I could to take care of them, my new family abandoned me. But my dad took me back with open arms. Today, he has put his tailoring on hold to help with Manha’s upkeep.
But all my dad’s love and my best efforts are falling short. I am only a single mom. Even if I wish, Rs 16 crore is an amount I am scared to even dream of.
This new year eve, Manha won’t feel elated for new beginnings unless you continue to share her sad story on every social media platform, donate wholeheartedly and tell Manha that she will make it. I dream of saving my daughter from the viciousness of Spinal Muscular Atrophy.
Spinal Muscular Atrophy is the #1 inherent cause of child mortality across the globe. Although SMA has been stealing kids from their families for generations, it was only in the 1980s that the disorder was identified. This life-threatening illness is therefore a fairly recent find. A sure-shot treatment for SMA, Zolgensma was approved by FDA only in 2019.
SMA has already taken children from my family. I have lost 4 of my younger siblings. My dad took them to every doctor and every hospital he could afford. But they couldn’t figure out what was wrong with my siblings. None of them made it past 1.5 years in age. Manha will turn one in February 2022. Back then SMA was not identified and there was no cure. But now, there is a way I can save my daughter. I can stop SMA from stealing my daughter. This 2022, make my dream come true. Help me get Manha, Zolgensma- the Rs 16 crore drug that is also considered the world’s most expensive medicine.
Manha was diagnosed with SMA Type-1 at Sri Ganga Ram Hospital. She has been advised to get gene therapy with Zolgensma. The total cost of Zolgensma in INR is subject to interest rate fluctuations.