“I make 80 rupees every day on the field. 1 kilo tomato, 1 kilo potato, and 1 kilo onion comes to more than 80 rupees. In this, I am supposed to buy dal, rice, expensive vegetables and fruits to keep my son alive. With that, he can only survive. There is nothing to help us save his life." - Vinayak, father of 1-year-old VishvaVishva cries for hours from hunger. He gobbles food in a minute when his mother, Asha, feeds him. As she leaves to go wash his bowl, he starts crying. She looks back and see that he has soiled himself. Vinayak cleans the loose stools by the time Asha returns from the kitchen with another bowl of food. She feeds him, and the cycle repeats. Vishva is not able to retain or absorb nutrients in his food. If they do not do anything right now, they will lose him by the end of this year.
Baby Vishvaraj has Wolman’s disease. His body is unable to break down fat. The fat builds up in his body damaging his organs. He cannot absorb nutrients from food, has severe diarrhea and vomiting, jaundice due to liver damage, and low weight. Although he is fed every hour, foods that are rich in nutrients, Vishva is malnourished. There is a cure, and Vishva needs it soon. If his condition deteriorates any further, even a bone marrow transplant cannot save him.
This baby started spending more days at the hospital than at home
Vishwaraj is Asha and Vinayak’s first baby, born to them right after they celebrated their first wedding anniversary. “He was God’s wedding anniversary gift to me,” says Asha. From the moment they saw their baby’s cute face, she and her husband had sworn to take care of him well – even if that meant spending beyond their means. Everything went well until the baby turned 6 months old and began suffering from recurrent cold and fever. Doctors kept saying it was pneumonia and Vishwaraj started spending more days at the hospital than at home.
“We started doubting the diagnosis. It could not be a cold if my son is in the hospital every other week. We kept asking doctors to take more tests. Then, we found out what is really wrong. I don't understand it. I have not heard of any child having such a disease. I don't even know what it is really doing to Vishva's body. All I know is he will die because of it.”-Vinayak, father
Vishva lies on the bed unable to move on his own
Due to weakness as well as the pressure that his enlarged spleen and liver are putting on his upper body, Vishva cannot move on his own. He does not roll over, which babies do around 5 months of age. He cannot sit, which other babies do at 7 months. There is little to no chance that he will start walking soon either. He needs his mother for everything, even helping him pick up toys to play with and hold the feeding bottle as his palms have no strength. He keeps crying and wants his mother to rock him all night.
"He has anemia, and if it gets worse, we have to run to the hospital for transfusing blood. So I cannot leave his side for a minute. I take him with me everywhere I go, be it to the kitchen to cook, or the backyard to pick up firewood. If his lips get pale, it is time to go.”-Asha, tearfully
He has been begging people in his village to help him, but nothing has come so far - he needs your help
Vinayak is a farmer who earns less than Rs 80 a day. His son’s diagnosis came as a shock to him, and he has been struggling to arrange money for his regular hospital visits and tests ever since. He has been begging people in his village to help him, but in vain.
Vinayak is running out of time. Every day they lose in trying to arrange money, is a day that Vishva's condition deteriorates further. Currently, Vinayak and Asha are surviving on water, and congee, so Vishva can stay alive.
“When people ask us what is wrong with our baby, we don't even know what to say. I tell them he has loose motion every hour, anemia, jaundice. They will give some home remedy. They blame my wife for not feeding him properly or they say that it is not possible. They don't believe that he will die. They think we are just lying and exaggerating. So nobody helps us.”-VinayakYour kind contribution will ensure that this baby boy gets a bone marrow transplant and survives
Supporting document
The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organizer or the medical team.
