"My son keeps scratching himself all day and night until he bleeds. He has not been eating or sleeping. He cries and screams loud because he is unable to bear the pain!"
2 years old, Nihaal has been in pain for most of his life. Recently we found out that he was born with a liver disorder that has been slowly killing him. For over a year, even though we went to doctor from this village and managed on medicines, we never knew the magnanimity of this disease nor did my son get any relief. He is racing against time to survive liver failure.
When our baby was born, he was so beautiful that we never imagined there could be something wrong with his health. 2 months later, he got jaundice. We took him to a local MF in this town of Manikonda. He prescribed medicines and we hoped it would get better.
"For a year we gave him these medicines. For a year, our baby boy kept having vomiting, severe itching, white stool. He would not sleep at all. All night when he cried we would stay awake to pacify him. And, all that time, we thought it was jaundice."Nihaal's skin got so sensitive that it tears easily, and he is irritated all the time because he feels like itching all over. It got so unbearable for him that he began to scream continuously. We told the doctor he HAD to do something! It had to be something more! So, he referred us to Dr. Prashanth at Rainbow in Hyderabad.
When we rushed him there, a liver biopsy showed that Nihaal's liver was badly damaged. He was diagnosed with PFIC (Progressive Familial Intrahepatic Cholestasis), a congenital liver disorder. He still insisted that we try going for a different course of medicines and if that does not work, then we go for a transplant. It was because all avenues need to be exhausted before opting for a liver transplant.
Nothing helped. We are not exaggerating when we say Nihaal did not sleep. He began urinating blood. All this stress, over the 2 years has given me BP, and my wife has stopped eating causing ulcer. We pleaded with the doctor to help our son. Though he was given sleeping pills, Nihaal now sleeps for just 2 hours. He can digest only breast milk and milk rice.
We had 2 miscarriages before our first daughter, Nancy (4) was born. We consider both our children as our gift. We cannot lose either of them. Because of Nihaal's condition, we had to send our daughter away so she can stay with my brother and have a normal life. All the crying, pain and blood around Nihaal would traumatize her. It has been painful to keep our children apart, and be away from her.
I work at a seeds company packing seeds. I get Rs. 15,000/month which goes towards the rent, household expenses, Nancy's and my younger sibling's education. I had to quit education as my father died when we were young and I had to step up for my family. I managed to get one of my brothers to study and he is working as a teacher in a town nearby. He is taking care of Nancy. I just hope this nightmare ends for us. I just wish we can save Nihaal.
With every passing day, his condition is getting worse. Now, we have been given an ultimatum. Nihaal needs a liver transplant soon. If he does not get a new organ, we will lose him forever.
2 years of trauma. No child should go through something like this and no parent should be witnessing it. Please help us save our son!
The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organizer or the medical team.
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