“I’ve already lost two of my babies to this dreadful disease. After learning that this was a genetic disease, we decided to not have any more kids. Purushotham coming into our lives was a total surprise, and we looked at it as God giving us another shot at being parents. We were so happy when he was born without any problems… we should have known it was too good to be true.” - Shantha, mother
He suffers from the same deadly liver disease that killed his brothersFor Raja and Shantha, the journey to parenthood has been filled with tragedy and unbearable losses. They’ve previously lost two of their babies to a rare liver disease. Their first son died only 6 months after his birth in 2010, and their second son in 2012, right after he turned 1. Now, 7-year-old Purushotham is grappling with the same disease that killed his brothers, and they fear it will take him away too.
“He was only 3 months old when it started. There was an odd little lump on his head which wouldn’t go away, so we took him to a doctor, and he underwent many tests. There was some clotting in his brain, and we learned that he has the same liver condition that killed our other two sons. We were absolutely crushed…” - Raja, father
Purushotham suffers from a disorder called Progressive Familial Intrahepatic Cholestasis (PFIC), that causes liver disease. It occurs when the liver cells' ability to secrete bile is reduced, and typically leads to liver failure.
He’s never had the chance to live a normal lifePurushotham has been under treatment all his life. He would also frequently suffer bouts of recurring jaundice. Because of his condition, little Purushotham never had the opportunity to go to school, or indulge in his childhood like other kids his age.
“3 years ago, at one of his regular check ups, the doctor told us that his condition had improved a lot. He would have to get a liver transplant in the future, when he was about 15, but it wasn't an urgent need. We were so relieved to hear that. Even after the reassurance we had received, we'd been extremely careful. But now…” - Shantha
His parents have done all they could, now they need your helpEarlier this month, Purushotham had a severe case of jaundice and none of the medicines that were prescribed to him were working. His parents were informed that his liver has failed and he needs the transplant urgently. If it is put off any longer, then they could lose him. But only a coolie and flower vendor, Raja has no way to bear the expenses of such a costly procedure.
“Everything I had, I have spent on my son’s treatments so far. His medicines and tests are so expensive that they use up a major portion of my monthly earnings. Some days we don’t even have food to eat, and have to go to bed on an empty stomach. I’ve had to even beg and borrow from moneylenders to keep his treatment going. In this state, how in the world can I afford 19.5 lakh rupees? Am I going to lose my son again because of my inability to save him?” - Raja
“Amma, Appa, don’t worry! Nothing is going to happen to me”, are the words that always echo in Raja and Shantha’s ears. All they want to do is save their son and give him a good life, but they are failing miserably. In their difficult time, they hope you can be their ray of hope.
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