How One Mother's Grief Became a Lifeline for Rare Disease Families

Shital Bhatkar founded two initiatives, With Aarya and Don Ghas, to support families affected by rare diseases. Her work began in 2010 after her son Aarya was diagnosed with Niemann-Pick C, a rare storage disorder. These projects now provide vital aid to patients and caregivers in Maharashtra. Aarya Bhatkar was diagnosed with Niemann-Pick C at just 18 months old. Due to limited diagnostic facilities in India, his blood and skin samples had to be sent to the Netherlands for testing. His mother, Shital Bhatkar, started With Aarya in 2010 to raise awareness about the condition and support other affected families.

Driven by her personal experience, Bhatkar later launched Don Ghas to address immediate needs. The initiative began with 50 food packets and now delivers around 1,200 home-cooked meals daily across five government hospitals. She also assists patients at KEM Hospital by providing wheelchairs, funding tests, and supplying medical essentials.

Both initiatives initially started with Bhatkar alone but have since expanded with the help of volunteers. Veetika Deoras, SVP-Brands & Marketing at The Indian Hotels Company Limited, has praised the impact of With Aarya and Don Ghas. Their shared goal is to ensure patients' medical needs are met while supporting caregivers. Aarya passed away in 2015, but his mother’s work continues to make a difference. With Aarya and Don Ghas now provide critical support to many families facing rare diseases. The initiatives have grown significantly since their inception, offering practical help to those in need.