“Even after 3 years of age, my little baby can barely speak a word or even take his baby steps. Every moment Manoj and I wait for some miracle to happen so that we have a normal happy family like others. We are dying every day hoping that he would speak to us. But a severe liver disease has kept us distant from happiness.”
Not just Aditya had bizarre symptoms, but his disease is fatal in itself3-year-old Aditya showed no signs of illness when he was born. Rupali and Manoj had just started planning for their little baby. Things started taking a bad turn when Aditya turned 7 months. While a normal baby should get neck control at 4 months, Aditya didn’t get it even at 7 months.
“MRI was done and the reports left me shaking. My little baby has a rare disease called maple syrup urine disease. It is a condition where the body can’t break amino acids in the body. If the amino acid gets collected, it can even kill him. He’s constantly at high risk of seizures and brain damage.”
Parents couldn't bear to see their baby crying constantly in painWhile Manoj works in a private company, Rupali stays at home with Aditya all the time. Rupali tries to make him walk, but fails all the time. Aditya crawls around the house all day and his bright smile escalates Rupali’s fright of losing him any moment even more. She just can’t afford to let that smile go missing.
“Aditya is kept at a low protein-diet and can’t have normal food like us. When Manoj and I settle down for our meals, he just stares at us blankly asking for what we eat. As a mother, it is painful for me that I can let my baby eat from my plate and he is deprived of any normalcy in life.”
Parents are forced to lie to their baby to save himAditya’s liver is severely affected and his parents are on the verge of losing him any moment. Only a liver transplant can save him now. Rupali is ready to donate a part of her liver to save her baby. Although she is scared, she’s ready to take up every pain to save her baby.
“He is such a small baby, he doesn’t even know what is happening to his body. We have to tell him that we’ll take him around and we make him land in the hospital. It feels terrible to lie to my own baby. He starts crying as soon as we enter the hospital. All we want is to free him from his pains.”
The low protein supplements which are the only part of Aditya’s diets are very expensive because they are not available in India. Because Manoj had a moderate income, they have somehow managed to spend Rs 10 lakhs on Aditya’s treatment so far. But they are in no position to manage the expenses of Aditya’s liver transplant.
How you can help?3-year-old Aditya is suffering from a strange liver disease for which the only way to let him live is a liver transplant. The cost required to save the toddler right now is Rs 15.5 lakhs which the parents have no means to arrange.
“These years has drained us emotionally and financially. We have somehow managed to pay the bills so far. We have spoken to a few relatives, but there has been no help so far. Every day delayed increases my baby’s sufferings. We just keep hoping secretly that the wait doesn’t kill him.”