Crowd funding campaign to save a two-year-old kid

Hyderabad: Parents of two-year-old city boy who is suffering from a rare liver disorder since birth, have recently turned to crowd funding to raise money for an emergency

liver transplant

operation.

While the total cost of the operation has been pegged at Rs 22 lakh, parents of Nihaal Prian, who has been suffering from Progressive Familial Intrahepatic Cholestasis (PFIC) are trying to raise Rs 9 lakh through the crowd-funding platform Impact Guru.

So far, they have managed to raise close to Rs 93,937, through donations on the online platform.

“Since my son has been suffering from this rare liver disorder from birth, he has been suffering from intense itching, ever since we can remember. He keeps scratching his body rigorously through day and night and this often results in bleeding. He neither eats nor sleeps. Unable to bear the pain, he keeps crying continuously,” said Ramakrishna, father of Nihaal and a daily wage labourer who lives in Manikonda with his family.

“We have consulted many hospitals, doctors and have tried taking many medicines to reduce the effects of the condition. Doctors have finally suggested undergoing an emergency liver transplant operation, which according to them, is mandatory and is only option left for my son to stay alive. My wife Swetha has agreed to be the donor for our son,” he added.

According to research published by the National Technology for Biotechnology Information (NCBI), PFIC is part of a group of rare, chronic liver disorders which are caused by defects in bile secretion and whose symptoms usually manifest during infancy and childhood, typically three months after birth.

“Since Nihaal's birth, I have spent nearly Rs 3 lakh for his medication and have run into debts. For a daily labourer like me, who struggles to provide food twice a day, it is near to impossible to pay Rs 22 lakh for an operation. In spite of having approached state government departments regarding this, repeatedly, we have been denied any help. This is when doctors at the hospital suggested we use a crowdfunding platform instead,” added Ramakrishna.

Graphics

Features of PFIC

· A group of rare, chronic liver disorders

· Caused by defects in bile secretion

· Symptoms usually manifest during infancy and childhood

· Patients are characterized as having early onset cholestasis, progressive liver cirrhosis, and hepatic failure in the first or second decade

Treatment Options

· Biliary diversion procedures

· Liver Transplantation


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