Rare Disorder Awareness: How Shital Bhatkar Is Supporting Patients and Caregivers in Maharashtra (VIDEO)

Wadala resident Shital and Vikrant Bhatkar’s son, Aarya, was one and a half years old when he was diagnosed with Niemann–Pick C, a rare storage disorder that typically affects one in 5,00,000 people. The challenges began with securing a diagnosis. The family had to send their child's blood and skin samples to the Netherlands for testing, highlighting the limited diagnostic facilities available at the time. The experience made them realise how difficult it would be for families with fewer resources to navigate the healthcare system.

"If we, despite being educated and financially secure, faced so many hurdles, how would less privileged families care for their children?" shared Shital. That question became the driving force behind the decision to raise awareness about the disease. She began her advocacy journey by starting her organisation, With Aarya, in 2010, and has continued this philanthropic work even after losing her son in 2015. 

She is present at the centre at KEM Hospital, where she assists patients with their immediate medical needs. This includes providing wheelchairs, funding diagnostic tests such as blood tests, CT scans and MRIs, and supplying essential medical items such as stoma bags. "Our focus is to ensure that patients' immediate medical needs are taken care of," said the founder.

Having experienced firsthand the stress and trauma of caring for a child with a rare disorder, she also understood the often-overlooked needs of caregivers. "Who takes care of the caregivers?" she found herself asking. That question led to the launch of Don Ghas—which means "two morsels" in Marathi—an initiative that provides free, home-cooked meals to patients and their caregivers. Each meal includes dal, roti, sabzi and a banana. The programme began by distributing just 50 food packets. Today, it serves around 1,200 meals every day across five government-run hospitals in Maharashtra.

Veetika Deoras, SVP-Brands & Marketing, The Indian Hotels Company Limited, shares, “Shital’s story is both heartbreaking and heartwarming. It's a typical and a beautiful example of how she's managed to make her personal adversity such a blessing for others. People like her are rare who take something that's pained them and make that the mission of their life to ensure that others suffer little or no pain. Her endeavor was started alone and then individuals like us got attached to the cause and it's beautiful to see how her one woman army is today. A group of people who relentlessly and selflessly devote themselves to the service of others.”    

If you would like to get in touch with the NGO, you can visit www.withaarya.ngo