“We’ve seen him suffer his whole life. On some days, he gets blinding headaches and he can’t stand properly or even walk. Other times, he tries his best to live like a normal 8-year-old, but his bulbous head weighs down on him. We can do nothing but watch helplessly as his condition robs him of his childhood. If he doesn't get his surgery soon, then we might lose him…” - Chavi, mother
A rare congenital condition has caused fluid to accumulate in his brainJust after his birth, Sibam had to spend over a month in the hospital during which his parents were made aware of his diagnosis. Sibam suffers from a rare neurological condition called hydrocephalus, where excess cerebrospinal fluid (CSF) has accumulated in the deep cavities in his brain, causing his head to swell excessively.
Generally, CSF cushions the brain but too much of it puts harmful pressure on it. Hydrocephalus can lead to brain damage and hinder its proper functioning. Moreover, Sibam's ailment was classified as terminal and his family was asked to get an operation done urgently, failing which they might lose him.
“We were absolutely shocked. The diagnosis flipped our whole world upside down. We couldn’t believe our newborn baby was suffering from a condition like this. They told us that without treatment, our child wouldn’t make it past the next 4months. But luck shined on him and he has managed to survive 8 years! Our only hope is to get him operated before it’s too late…” - Rajesh, father
Knowing they couldn’t afford their son’s treatment, given their low-income background, the family started going door-to-door to collect donations apart from pooling in their collective income from their respective jobs. They also sought help from the media to cover Sibam's story for fundraising. But it didn’t yield them much results.
Determined to save their son, his parents refuse to give up
“We continued seeking and collecting funds from anyone that was willing to help. But every hospital we approached, from Kolkata to Bangalore, denied us treatment because of our financial inability. We were so disheartened and low on hope, and we had no choice but to return home. But there was no way we were giving up on our child.” - Chavi
Apart from selling small items on his cycle, Rajesh began trying his luck on lottery tickets, hoping to win enough money to keep hydrocephalus from taking his son away from him. On the other hand, Chavi does daily chores at other people's houses, earning up to INR 1,000 per month. But, their collective income still falls short when it comes to the amount required for young Sibam's treatment, i.e INR 15 lakh.