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Shital and Vikrant Bhatkar have made it their life’s mission to help families with financial, emotional support.

Little Aarya was his parents’ pride. As he was growing, though, Shital and Vikrant Bhatkar realised something was terribly wrong: their one-and-a-half-year-old child was struggling to walk and had a bloated tummy. They went to a paediatrician who then referred them to a paediatric neurologist. What followed was a nightmare. After several tests, the doctor told them their child suffered from a “storage disorder.” They had to go in for more tests to determine the exact nature of the disease.

Says Mr. Bhatkar, “This is when we realised how difficult the medical situation is in our country.”

There were no laboratories in Mumbai that could test samples for storage disorders, and the couple had to send them to Hyderabad. That too, gave them just a basic diagnosis. They had still not identified the exact category of the disorder.

A patch of Aarya’s skin was sent to a lab in the Netherlands in 2010, the world’s only testing centre for storage disorders. He was diagnosed with ‘Niemann Pick C’, a storage disorder that typically affects one in 1,00,000 and was probably the only known case of the disorder in Mumbai at the time. “General know-how of this disorder was very limited and that was the biggest challenge for us. There were no medicines and no specific care pattern was suggested,” says Ms. Bhatkar. She tried to understand the disorder through the internet and connected with parents in similar circumstances.

Storage disorders, says Dr. Mamta Muranjan, Consultant in Clinical Genetics, Hinduja National Hospital, are inherited metabolic diseases characterised by an abnormal build-up of toxic materials in the cells as a result of enzyme deficiencies. There are nearly 50 such disorders, and they affect different parts of the body. There are around 700 patients in India, according to the Lysosomal Storage Disease Support Society, Delhi, of which Ms. Bhatkar is the Mumbai representative.

The couple had to face several challenges; for one, they had to import medicines from Switzerland which was very expensive. “The medicines cost Rs. 5,000 per capsule, which had to be taken every day all his life,” says Mr. Bhatkar.

Aarya would often get seizures, which had to be constantly monitored. He had to undergo physiotherapy sessions everyday for his posture and limb movements. He was required to have a port for feeding as he could not swallow things and had to be fed every three hours.

“Emotionally, it was draining to see his health deteriorate every day. We could identify the differences in him probably every week and it was really saddening to see your own child go through this,” says Ms. Bhatkar.

It made them realise the plight of other parents going through the same ordeal. “We imagined how difficult it must be for parents with poor financial and educational backgrounds,” says Mr. Bhatkar.

The couple started WithAarya in 2010, a not-for-profit, with the aim of providing emotional and financial support to parents whose children suffer from a similar disease, spread awareness, and fund research.