My Life was very smooth and became lovelier when I was blessed with a baby boy Garvit. We enjoyed every moment of his infancy till he was 6 month old. After touching the 6 month milestone I was able to sense that my baby boy was struggling. He was then diagnosed with a non curable disease called SMA( Spinal Muscular Atropy ). My family went into a deep shock. Why me? Why us? Why my Garvit?
I left my job and sat in a depressed state for 1 year at home. Since then we have struggled for 8 yrs now, in search of some cure. This disease demands a lot of care and maintenance. No financial and emotional support was another killer for us. To harbour some emotional support we started this beautiful FSMA community. All of us have been together in our struggle since then. One day we came across the news that all of us have been waiting for desperately. We were relieved to hear that after 10 years of extensive research in USA a medicine named SPINRAZA(Developed by Biogen) has been approved, which will cure the disease upto 40%. This was our silver lining. I deeply request the government of India and Biogen to make Spinraza available in India at an affordable cost because my son’s life and that of all sma children depends on it. If we fail to intervene in time SMA will continue to cripple families. It’s only us who can put an end to it. 🙏🏼🙏🏼🙏🏼 #smafreeindia #careforrare #wearerare #ordi #mohw #fsma #fsmaIndia #ourlivesmatter #SMAwarenessMonth #smawarrior #fight4life #sos #cureforall #curesma #30days30stories
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