How one mother's grief became a lifeline for rare disease patients
How one mother's grief became a lifeline for rare disease patients
How one mother's grief became a lifeline for rare disease patients
Shital Bhatkar turned personal loss into a mission to help others. After losing her son Aarya to a rare disorder in 2015, she continues to support patients and their families. Her work has now gained recognition from major organisations, including The Indian Hotels Company Limited. Bhatkar’s journey began in 2010 when she founded With Aarya. The organisation aims to raise awareness about Niemann-Pick C, a rare condition affecting about one in 500,000 people. Her son Aarya was diagnosed with the disorder at just 18 months old.
Due to limited diagnostic facilities in India, the family had to send Aarya’s blood and skin samples to the Netherlands for testing. Despite his passing in 2015, Bhatkar expanded her efforts to assist others facing similar struggles.
She now supports patients at KEM Hospital by providing wheelchairs, funding diagnostic tests, and supplying essential medical supplies. In addition, she launched Don Ghas, an initiative offering free, home-cooked meals to patients and caregivers. What started with 50 food packets has grown to around 1,200 meals served daily across five government-run hospitals in Maharashtra.
Her dedication has inspired many, including Veetika Deoras of The Indian Hotels Company Limited. Deoras called Bhatkar’s work a beautiful example of turning personal adversity into a mission to help others. Bhatkar’s efforts have transformed from a solo endeavour into a collective movement. Her initiatives provide critical support to those in need. The Indian Hotels Company Limited has now aligned itself with her cause, further amplifying her impact.