After losing son to rare disease, this couple finds hope in helping parents fighting similar battles

After the loss of their seven-year-old son Aarya to a rare genetic disease, Shital and Vikrant Bhatkar, channelled their grief to start WithAarya, an organisation that extends emotional and financial support to families and parents whose children face similar chronic illness.

Loss is painful. Death often leaves us numb. It becomes even more haunting when it involves a child. Shital and Vikrant Bhatkar found themselves in similar situation, yet they refused to accept their seven-year-old son’s death as the end. Eighteen-month-old Aarya was diagnosed with Nieman Pick ‘C’, a storage disorder which typically affects one in 1,000,000 people.

With only 500 similar known cases registered globally, the duo channelled their grief to start WithAarya, an organisation that extends emotional and financial support to families and parents whose children face a similar disease such as Aarya.

Every time I see a patient smile or an afflicted child's wish getting fulfilled - I see my son's smiling face in theirs. All humans are one and the same, and everyone's suffering is linked. I feel Aarya's presence in the hospitals where I volunteer or distribute food, Shital says.

An unfathomable loss

Shital never thought of herself as a career woman. She had grown up picturing herself as someone who would be a great wife and mother creating a beautiful, cosy home. After her first child Prachiti was born, she gave up her job at IndusInd Bank. Her life continued to revolve around her family and four years later she was pregnant again.

Strangely, I was terribly anxious about something but I couldn’t put my finger on it. I had terrible nightmares about having an abnormal baby, Shital recalls.

Aarya was born a normal baby but within 18 months, her parents noticed that unlike other toddlers he was still unable to walk or stand properly. When they approached a paediatric neurologist, the doctor confirmed that he had a ‘storage disorder’ but they failed to confirm the nature of the disease.

Essentially, Aarya’s body was incapable of breaking down lipids like fat and cholesterol in the way a normal human body does. This leads to the abnormal accumulation of these substances within various tissues of the body, including brain tissue, eventually causing complete organ failure.

“It was a big task to identify the lab where we could get the tests done. And we couldn't find any in Mumbai,” Shital says.

Why us, was our question. We were told clearly that there was no medicine for his disorder. Only a few cases have been reported in India. And most doctors had very zero or very little knowledge of its treatment.

The parents approached the best specialists across the country, yet, diagnosis wasn’t easy. A patch of Aarya’s skin had to be sent to the only testing centre in the world — in the Netherlands. The centre had many cases lined up and the skin-patch was spoilt even before it reached the lab.

The parents then extracted another patch of skin from the two-year old. And a year later, he had an endoscopic gastrostomy surgery which helped him to swallow food. When the doctor failed to provide adequate help on managing day-to-day activities, Shital found solace online and connected with parents in similar circumstances.

In 2011 the couple invested Rs 5 lakh for a batch of 90 tablets which helped to restore Aarya’s deteriorating health.

“Though Aarya would not be cured, at least I wouldn’t lose my child,” Shital thought. The medicines had to imported and cleared at the customs.

Despite the efforts, Aarya’s continued his struggle for survival and days passed in a haze. They lost Aarya on February 20, 2015, three months before his seventh birthday.

Entrepreneurial spirit in times of despair

During their struggle to take care for their child, Vikrant and Shital realised that there was an urgent need to create awareness about Niemann Pick C. They realised that like them there was a majority of the Indian population who did not have access to technology and lacked a support system. This inspired them to start ‘WithAarya’ in 2011, an organisation which aimed to provide guidance to patients and their families who suffered from such terminal disorders.

Soon, doctors from all parts of India started asking patients in getting in touch with us since we could provide them with supportive care required to take care of the patients which was difficult otherwise, Vikrant says.

WithAarya was initiated while Aarya was undergoing tests. “We identified that many affected patients were coming from rural areas or from families who could not afford these expensive tests. Hence, though WithAarya, we started supporting these people with help from few donations,” Vikrant explains.

The organisation provides aid to the needy by organising medicines, equipment, and perishable items. As most of the storage disorders do not have a cure yet, the only thing parents and relatives could do was to provide supportive care which would make life slightly better.

Support for the neglected

While volunteering for Make My Wish foundation Shital came across the plight of many relatives of patients who were admitted in King Edward Memorial hospital.

They had no money to buy any medicines, leave alone buying food for themselves. There were some people who were staying on the pavements without any shelter/food for months, Shital explains.

Hence, WithAarya started an initiative called ‘Don Ghaas’, a Marathi term for meal, in October last year, to provide food for 50 people every day who stood outside hospitals at the cost of Rs 10 per packet. One food packet had chapatis, sabzi, khichdi and banana.

Gayabi Laxman Shevkar and her son, Padmanath travel from a remote town in Dhule in North Maharashtra to Mumbai for treatment at KEM Hospital. Post his operation, Padmanath required daily physiotherapy sessions to gain fluid movement in his right arm. With no place to stay, they lived under a tree at the KEM hospital near gate no. 3. The mother-son duo would share one food packet and eventually discussed their story with Shital and Vikrant. After weeks of effort, WithAarya managed to get them accommodation in a nearby ashram. 

“They will now at least have a shelter during the rains!” Shital adds.

Today they distribute 100 food packets every day with financial support from friends and families. Through word-of-mouth, they gained further financial assistance from mutual friends and organisations.

There are many more patients who line up for food. Sometimes people have to be turned back, empty-handed. Some people ask for money to meet their hospital contingencies, and a place to live, Vikrant says.

Hospitals often rob the festive spirit among patients and their relatives. Hence, this year on Raksha Bandhan, WithAarya celebrated this festival in a unique way. Volunteers went about looking for rakhees at unusual places and their search ended at the blind school.

“We thought it would be wonderful to buy from a place where we can lend support in some form or another. As we went up purchasing the finely woven threads, we encountered blank eyes but were greeted with gratuitous smiles and touches. The joy doubled when we distributed food at the school. The thread of love, commitment, and protection links us with the various beneficiaries,” Shital explains.

Volunteers Kedar and Aarti Lele even distributed homemade gulab jamuns with the food packets.

Future plans

Don Gras over the past year has grown and is currently assisting families to access information on various life-threatening diseases and also coordinating between doctors and families. They have also started supporting underprivileged people to gain access to medical tests through donations from friends.

“We need a constant flow of funds which word-of-mouth cannot give. We need more awareness. We also need more volunteers to help up distribute food at hospitals as it is becoming tough for us to reach ourselves every day, all days of the month,” Shital adds.

Currently, they feed patients and their relatives who are undergoing treatment at Tata, KEM and Wadia Hospital. Fifteen permanent volunteers stand opposite the hospital premises, Monday to Saturday between 11.30am and 12.30pm.

Through social media, the couple has managed to garner support from firms like JM Financial Corporation.

Shital can be contacted at: shitalitis[at]gmail[dot]com

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