Kavya was born in January 2008 to us at Moolchand hospital, Delhi. When she turned 4 months old we noticed she was not holding her head or moving her legs, though she had movement in her arms. We raised these concerns with her Pediatrician who referred her to a neurologist. The neurologist immediately suspected Spinal Muscular Atrophy or SMA and a genetic test finally confirmed our fears few weeks later.. we were told to love her and care for her for she wouldn’t live past 2 years of age..
Our happy home was filled with sadness but for her sake we kept up a brave face..
In October that year when she was 9 months old she came down with severe pneumonia. We were told to expect the worst but we she didn’t give up. She fought against all odds, even on the ventilator, and impressed her doctors, Dr. Rajiv Uttam and his team. They too felt a need to help her and started her on Bipap to aid her respiration and put a g-tube in her stomach for direct feeding into her stomach that improved her strength. 6 months and many hospitalisations later she stabilised and since then she has been surviving with the help of Bipap and cough assist.
Though her life may seem bleak to others, she has focused on things she can do like boss us around, shout for Peppa Pig and Winnie the Pooh, sing songs and hymns, and shake a leg to Bollywood hits💖
By God’s grace she has made it so far but SMA is a progressive disease and it won’t stop till it weakens her completely..
I don’t know what God’s will is but I pray that he bends it to mine and gets the pharma companies and government to help kids like her who need this medicine just to live🙏🏼🙏🏼🙏🏼 #smafreeindia #careforrare #wearerare #ordi #mohw #fsma #fsmaIndia #ourlivesmatter #SMAwarenessMonth #smawarrior #fight4life #sos #cureforall #curesma #30days30stories
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