“His stomach gets so painfully bloated that we can’t even carry him for long to comfort him. Even touching him causes him pain, and he cries all the time. He barely sleeps and struggles to swallow milk. This disease will kill our baby even before he turns one if we don’t get him treated in time. He has only a few weeks left to get a life-saving liver transplant, but now we’re more helpless than ever.” – Kumud, Baby Anurag’s father.
Every time Kumud and Lalita take their 7-month-old to the hospital, his painful cries and screams echo through the quiet corridors. All his teary eyes plead for is to be saved from the misery of this deadly disease. Baby Anurag has an end-stage liver disease, and without timely treatment, it will cause severe damage to his other organs and kill him.
The little one has known nothing but pain since birthEven when baby Anurag was born with jaundice, Kumud and Lalita were not too worried. They thought that the yellowness would clear in no time, and he would be fine. Unfortunately, Anurag’s jaundice was something far more serious - his tests revealed that his liver was completely enlarged.
“For a long time, we didn’t understand what was happening or how serious his disease is. His liver is failing and the longer he goes without a transplant, the lesser his chances are of surviving this. He’ll start having seizures and won't even be able to move any more. There will be no going back from that. Not a single day has gone by where he hasn’t cried, not a single day without pain.”
Baby Anurag has Niemann Pick-disease, where excessive fat accumulates in the cells. This first affects the liver and spleen, then causes difficulty in learning and speaking. He now has an end-stage liver disease because of this. Every day, fluid is drained out of his little body to ensure his stomach is not painfully bloated. But this procedure and medicines can only keep him alive for so long, he needs an urgent liver transplant to survive.