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.
A helping hand
While taking care of Aarya, the couple came across many families in rural areas who did not have funds for expensive tests. WithAarya started supporting these people who came to KEM, Tata and Wadia Hospital by providing funds for tests, arranging equipment and liaising with doctors and pharmaceutical companies to ensure the patients get medicines and supportive care. WithAarya is now extending support in case of all ailments.
Shah Mehjabeen (31), a resident of Andheri, met Ms. Bhatkar in 2013 when her elder daughter was diagnosed with Niemann C Pick at the age of two-and-a-half. “We were clueless about this disorder. Not only did she help us understand the disorder better but she also guided us at every stage.”
In February, 2016, Ms. Bhatkar got associated with Make My Wish Foundation, an NGO that works to fulfil the wishes of terminally ill patients. She came across families who came from far-flung areas and had no money to buy medicines leave alone food for themselves.
WithAarya started ‘Don Ghaas’ (meaning two morsels in Marathi) initiative in October 2016 to provide lunch packets for 50 people every day near KEM Hospital at ₹10 per packet. Currently, they distribute 100 lunch packets and 125 dinner packets. The packet contains three chapatis, a vegetable and khichdi along with a banana. Thirteen volunteers (mostly homemakers) take turns to distribute food.
The road ahead
Despite their best efforts, the couple lost Aarya on February 20, 2015, three months before his seventh birthday. “We want to spread the initiatives of WithAarya — both spreading the know-how about various disorders and ‘Don Ghaas’ — to other government hospitals,” says Ms. Bhatkar. The couple are funding the initiative, and donations are few. “Every time I see a patient or a parent smile, I see my son’s face in theirs. I want to spread this smile not only in Mumbai but across the country,” she says.
WithAarya
Founders: Shital and Vikrant Bhatkar
Founded: 2010
Funding: Self, donations
Staff: 13 volunteers
Web: www.withaarya.ngo
