'When Alamelu was told the name of the disease by the doctors, she angrily yelled the name aloud, as if it were a person and then broke into tears. It was the first time that she had been given the name of what had snatched her four sons away, and had now come back for Siva.’
Alamelu and Velu have lost four of their sons to the same disease and the horrors of their past have come back to haunt them. Their 14-year-old son Sivaprakash started showing similar symptoms from March this year and was eventually diagnosed with a rare genetic disease called Hemophagocytic lymphohistiocytosis (HLH). The family hails from Erode, Tamil Nadu, where their occupation is washing and ironing clothes.
“The doctors at the local hospitals couldn't diagnose what ailed my four deceased sons and we didn't have the money to get them treated at expensive hospitals. But we didn't lose hope. When we lost our fourth child, I started feeling helpless and even felt I was cursed. As a mother, I dreaded that feeling. That helplessness has come back to haunt me. We still don't have the money, but the doctors have given us hope. They are confident that Siva can be treated and have even suggested a way(crowdfunding) to get the funds required for his treatment.”
-Alamelu, Sivaprakash’s mother
Siva was preparing for the counseling session for higher studies after he faced his 10th standard Board exam when his belly and neck started to swell and he ran a persistent fever. With a little saving and help from relatives, his father was able to get him diagnosed at KMCH Hospital, Coimbatore. The doctors there are confident of his recovery after a successful ‘Stem-cell transplantation’. The same would cost them Rs. 20 lakhs. The family earns a meagre income through their small ironing stall and risk losing Siva for want of timely treatment.
“Sometimes I feel that Siva had sensed the pain and trauma that I went through right from when he was in my womb. Since his birth, I was very protective of him for obvious reasons, and he had that maturity to understand how precious he was to us. He would never leave my side when he was small. Even now, he never gives us a reason to worry and instead of loitering around with his friends after school, he chooses to come back home on time, and focus his attention on studies. He keeps telling me that he will become a computer engineer and will soon bring us out of our poverty.
-Alamelu, Sivaprakash’s motherHow can you help?
“After losing four children to the same disease, Siva is our only hope. I don't have the strength left in me to cope with yet another loss. Losing him would leave me with no reason to live. Please help us save him”
-Alamelu, Siivaprakash’s mother
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