MONISHA & KEYA HATKAR - Dancing on Wheels - Redefining SMA (Spinal Muscular Atrophy) as I M Possible.
What happens when your daily life is a high-stakes battle against biology? What happens when a "terminal" diagnosis meets an unstoppable spirit? If you are the Hatkar's, then you 'Dance on wheels.'
In this episode, we are joined by the powerhouse duo Monisha and Keya Hatkar, a mother and daughter who are transforming the narrative around Spinal Muscular Atrophy (SMA) from one of limitation to one of limitless impact. Keya [https://keyafightssma.in/about-me], a 15-year-old, is a recepient of the Pradhan Mantri Rashtriya Bal Puraskar, a three-time author (Dancing on my Wheels [https://www.bribooks.com/bookstore/dancing-on-my-wheels/?srsltid=AfmBOoo1I2gcrfM984Nnix7osf3AvH9OtPKQvX46JOZ4tzm5XJ89E8Ew], I M Possible [https://www.bribooks.com/bookstore/i-m-possible-/?srsltid=AfmBOooF527H4gL1ULC1ZocKbdmM2oLVHTL8ObMXCj1M-qgEXMwmqi6a], A book on how to write books [https://www.bribooks.com/bookstore/book-on-how-to-write-a-book/?srsltid=AfmBOor0_iB6tsgdnHiJYdtj2AHJ_XwnAAl6CRHpAtsvFHurcvGBLwZi]) , a TEDx [https://www.youtube.com/watch?v=6W5CqTCPat0] speaker and a podcaster. She has won multiple awards at the National Young Authors Fair for her books. She doesn't view her wheelchair as a limitation but a platform to dance on.
Her mother, Monisha Hatkar, is a professionally qualified architect who spent 25+ years in corporate real estate before pivoting her life to become a "Chief Belief Officer" for her daughter. A podcaster [https://open.spotify.com/show/4KV2puvzJAE00HyUzzSBt8]and community builder, today she is building the world's largest community on Inclusion. Through iniatives like I M Possible, SMAARTR [https://i-m-possible-and-smaart.com/f/smaartr-an-epic-journey-begins], they aim to generate revenue to build sustainability and self sufficiency for people affected by rare diseases.
At month 10, Keya was diagnosed with Spinal Muscular Atrophy (SMA), a rare progressive genetic disease. The doctors gave her 2 years to live, with Monisha's approach to life, they have far from beaten those odds.
SMA affects 1 in 10,000 people and is one of the world's most expensive medical interventions costing crores of rupees each year.
#rarediseases #SMA #resilience