"Santosh looks bluish all the time because his body is not getting enough oxygen. He has extremely low BP along with fever. He is so weak, and cries out if he has to sit up or walk. My son is only 13, and he is bedridden."
13-year-old Santosh is the youngest son of Shivananda and Madan. He has been suffering from liver disease since he was just 6 months old. Delay in arranging money for his treatment has only caused his condition to deteriorate. Now, he needs a new liver, and soon.
While the parents thought that he would become better, in all these years he’s slowly been slipping away
“When Santosh was just 6 months old, he had a fever and his blood pressure dropped so much that we thought he would pass away that night. The doctor told us not to worry, that he had jaundice. Madan and I thought he’ll get better after a while.”
Months passed by and Santosh’s liver condition only worsened. He cried all the time in pain, was not able to eat. His temperature kept spiking up every day. Santosh has a condition called cryptogenic liver cirrhosis, where his liver is irreversibly damaged from scarring.
To make things worse for the child, he also has a hepatopulmonary syndrome from dilation of blood vessels in his lungs. His body has low levels of oxygen and he constantly has shortness of breath. The only treatment option left for this family, is a liver transplant.
The intelligent child has become bed-ridden and doesn’t have a normal life anymore
“My son’s life has come to a standstill. He is a creative person who loves to paint and build new things. I always thought he would turn into an engineer. We saved up for his school and college. Now, everything that was meant for his future is gone in trying to save his future."
Madan and Shivananda work on farms in Aurangabad. Madan cannot afford a day away from work as he will lose the few hundred he makes. As a result, he is unable to be with his son even when his health is turning critical. It has been months since Shivananda stopped working alongside her husband. She cannot afford to leave Santosh alone, and due to this, their family earnings have been cut in half.
“Money has been the only constraint on our way to save our son. Santosh sees his brother, Sachin go to school and asks me if he can ever go back. He knows his condition, he knows he may die, but he is determined to survive. What my son does not know is that it also takes money to save him. If I cannot afford this transplant, or the care he needs after, I will be forced to watch my son die."
How you can helpSantosh’s injections and medicines have already cost the family Rs 3 lakhs in few years. Hospitals have been kind enough to waive off the cost several times.
The subsidized cost of this liver transplant is Rs. 12.5 Lakhs. While everyone is trying to help this family with the funds, time is running out.
“We have borrowed from everyone possible. Now people are shutting doors on our faces because they are afraid we will ask for help. Madan is working day in and out in Aurangabad just to get Rs 160 a day. This does not even cover our food or his medicines, how will it save my son?"