If there is anything that can break parents’ faith and courage, it is the death of their child. But a Wadala couple, Shital and Vikrant Bhatkar chose to give their life a new direction after they lost their younger son to Niemann-Pick disease, a rare lipid storage disorder.
After witnessing the death of their son, they both felt that they must do something to help other parents who are in a similar situation. This led them to start an NGO
After Aarya succumbed to Niemann-Pick disease in 2015, Shital thought of starting an NGO to counsel parents of children who are battling this critical disease in different hospitals. “We were very helpless at that point and that’s why we thought of starting this initiative. Whenever families of children with this disease visit doctors, I go to the families and counsel them. It is very important to talk and share the concerns and anxieties as the disease has no cure,” she added.
The Bhatkar’s also feed at least 100 people outside KEM Hospital every day at 11.30am, except on Sundays. “We offer full meals to the relatives of the hospitalised patients because they come from different places. Some don’t have an accommodation,” said Shital.
Recalling the days in which their own son was battling this disease, the Bhatkar’s said, “Aarya did not have any other visible problem except that he could not walk or talk around at age in which most children could. Each visit to the paediatrician was met with responses like, ‘There is only a delay in the child walking, nothing else’. After he started showing another visible sign like a swollen abdomen, a paediatrician asked the couple to consult a neurosurgeon.
“We were asked to get a lot of tests done. What shocked us is that these tests were available only in Netherlands,” said Shital.
She added, “We still went ahead and got all the blood and bone marrow tests done for Aarya.”
All tests indicated towards the Niemann-Pick disease and treatment for the same was not available in India either. “Our son was a one-and-a-half year , at the time. Every doctor we went to just said that the disease cannot be cured. We were shattered, but we kept checking the Internet for all possible recourses we could take. We then ordered for medicines from Netherlands. Again, there was no one in India to help with the dosage. We just kept asking the pharmaceutical companies for help,” added Shital.