“I was supposed to take my son for chemotherapy on 18th. We could not come up with the money for the session by that day so I have not been able to go yet. Now he is already looking pale and weak. We never thought a disease could beat us because of affordability for diagnosis and treatment.”
2-year-old Amarnath shocked his parents when he began to exhibit symptoms of jaundice with swelling of the abdomen. Although they went to several doctors, it took long to diagnose him because of the rarity of the disorder. He has Langerhans Cell Histiocytosis that causes dysfunction in his immune system affection all his vital organs like the lungs, liver, and spleen. Due to the critical nature of the condition, Amarnath needs intensive chemotherapy. His family has been unable to afford the rising expenses and needs financial assistance.
Amarnath lives with his parents Nagarajan, Pushpalatha and elder sister Shamina in a small village nestled in Madurai, Tamil Nadu. Here, Nagarajan is an Anganwadi worker for a private contractor hired by the Corporation to undertake water-board related contracts. He supports the family on an income of Rs. 4700/month.
“Depending on the work, we do get extra on some days. Sundays are off, and we have to work only between 8 AM and 2 PM. My income has always been enough for our family, until now. We never expected this to happen, so until now it never felt like I was earning very less.”
Amarnath was a normal baby boy until he turned 1. Right after he stopped feeding on breast milk, he began showing symptoms that worried these parents. His abdomen began to bloat, and he turned yellow indicating signs of jaundice.
“The doctors at every hospital would keep measuring his belly. It bloated over 50 inches. He was not able to sit or even move. We saw that there was pus oozing from his ears. Nobody was able to figure out what was wrong with him for over 3 months. Finally, after tests worth Rs. 2 lakhs, he was diagnosed of Langerhans cell histiocytosis, a rare disorder that affects 1 in 200,000 children.”
Amarnath has a disorder where a specific group of cells called Langerhans cells clone at an abnormal rate and migrate to the lymph nodes compromising the immune system while affecting the organs. The disease has affected his liver, lungs, spleen and bones causing breathing trouble, severe jaundice with huge distension of the abdomen, and erosion of bones and more.
“Every few days we have to take Amarnath to Chennai for Chemotherapy. Over the past few months, we have delayed several times because it was difficult to arrange for the money. We have to pay at the billing desk before he gets treated. Eventually, it affects him. Even if we miss by a day or two, we can see how he gets weak, stops eating because he cannot hold food down, and does not even get up from bed because of fatigue.”
Nagarajan says that the family has spent over Rs. 12 Lakhs during the past year for Amarnath’s diagnosis, treatment and travel expenses. Their travel to Chennai costs Rs. 2000 every session, while managing food, stay and other miscellaneous expenses dry them up. He has taken loans from friends, relatives, and other sources, and has now run out of options to fund up to Rs. 30,000 for Amarnath’s next chemotherapy session.
“We cannot move to Chennai until the treatment is completed. It would be difficult to find work at this time. My wife and I are struggling to do what we can. He is just a child. We never expected this to happen, and I never imagined a disease to be so cruel. 1 in 200,000 and it had to affect someone who could not even afford diagnosis, leave alone treatment.”
This baby boy needs to continue with his chemotherapy treatment to be cured of the disease. The estimated cost for the treatment is Rs. 8 lakhs including supportive care, antibiotics, and blood products.
Nagarajan needs a lifeline right now, and you can help him save Baby Amarnath.
Supporting Document
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.
