“He has a very rare disease and it’s killing him. My husband and I are trying to do our best to work more so that we can afford the transplant that can save his life. But even after all this time, we are nowhere close. Now I can’t leave him alone for even a minute. I take him wherever I go…anything can happen to him.” – Ratna, mother
Madan has activated protein kinase delta syndrome, a disease that impairs the immune system. Children with this disease have recurrent infections that can be fatal. Madan was diagnosed in May this year and the only cure for this is a bone marrow transplant.
For over a year now, Madan has been in and out of the hospital. Sometimes admitted for 2 days, sometimes for 15. One day it’s a fever, the next a cough and one another day severely swollen arms and legs. The symptoms were plenty, but no one could tell Ratna and Lokesh what was making their son so sick.
They thought it was cancer
“We took him to 4 hospitals here in Bangalore, we even took him to hospitals in Tamil Nadu. But nothing. They did so many blood tests, they thought it was cancer first. They told us he had small tumours in his stomach. I remember praying, I know how dangerous cancer can be, I’ve heard stories. It wasn’t cancer, we were relieved. But soon we found out how dangerous even this disease is.”
Madan’s nose, forehead, hands and leg swell up a lot now. He is currently fighting a viral infection. He has to take injections every other day. Lokesh and Ratna have already spent 4 lakhs in one year on all his tests and medicines. 37 lakhs for his transplant is unimaginable.
Lokesh works as a daily wager who helps load goods in a factory. He earns Rs. 200 when there is work. Ratna now has only 2 homes that she works at. They both have borrowed from their employers and family. Even though with both their incomes together, they might not even be able to save a quarter of the amount needed to save their son, they continue to fight.
They haven’t given up, but they can’t save him on their own
“I don’t know what else we can do but keep going. We haven’t stopped asking people, we haven’t stopped working, we haven’t stopped saving. But none of this is enough. I know it isn’t. But…what else? Tomorrow when I look back I want to know I did everything I did to save our Madan.”
Ratna and Lokesh can’t do it on their own. They need your help to afford Madan’s bone marrow transplant. They are relentless in their fight, a helping hand can take them a long way.