“My life has always been about maintaining a routine. It gives a sense of control, I guess, over the uncertainties of life. But never in my dreams did I think that our life would go haywire in the blink of an eye. Now, my daily routine revolves around giving my son his medicines on time every single day. If I don't, my son might die," - Kala, mother, breaks down crying.
Until a year ago, though life was a struggle, Thiruselvam's parents led a peaceful life. Rajendran worked hard in the fields, other times he worked as a coolie. He tried his best and gave his children an education and two square meals a day. He wasn’t prepared for a disaster, however… a disease that threatens to kill his dear son.
I scolded him for his injury without knowing that he had nothing to do with it
“He came back from school that fateful day with a severe swelling in his leg. I scolded him that day thinking he was reckless while playing and had fallen down. When we checked with the doctors, they said it was not just a sprain but something worse. Multiple tests, multiple hospitals, thousands of rupees later, we got to know that my Thiruselvam has a rare disease. A year later, his liver is completely damaged. He won’t live long without a transplant.” - Rajendran, father.
Thiruselvam (15) has been diagnosed with Wilson’s Disease, a genetic disorder. In this condition, copper isn't eliminated properly from the body and instead accumulates, sometimes reaching life-threatening levels. This majorly affects his brain and the liver.
"He was a very healthy and active teenager who enjoyed sports, but now he is no longer his older self. His hands shiver uncontrollably and he is unable to catch a ball or hold his bat while playing cricket. Very often, his stomach swells up making it hard for him to even move about. I can understand his frustration and helplessness at these times and it breaks my heart to know that I have nothing to make his pain go away completely," - Kala, mother.
I could not repay a 2 lakh loan, how can I arrange 26 lakhs?
“The doctors have told us that we have to do the transplant as soon as possible. They said I have to arrange close to 26 lakhs for the transplant and the cost might even go up in case of any complications. I’m still unable to repay the 2 lakhs that I had borrowed previously for his treatment... How can I come up with more money?” - Rajendran, father.