“We eat leftovers or go completely hungry on some days to make sure our baby gets nutritious food – eggs, dal, fresh vegetables and fruits, etc – but nothing is helping him grow. He is always hungry and eats whatever we give him without a fuss, but then passes watery stools within minutes of eating. He is just 6 kgs now and is losing weight rapidly. Holding him feels just like lifting a feather,” - Asha, mother of 1-year-old Vishvaraj Dighe.
Baby Vishwaraj has Wolman’s disease, a disorder characterized by the deficiency of an important enzyme involved in the breakdown of fats in the body. As a result of this, this little one’s liver and spleen are growing bigger in size with every passing day due to the build-up of fats and cholesterol. This is what is causing his stunted growth, and without proper medical intervention, it can even cause death. There is only one cure for his condition – a bone marrow transplant, but his parents, who are reeling under poverty, cannot afford it.
This baby started spending more days at the hospital than at homeVishwaraj is Asha and Vinayak’s first baby, born to them right after they celebrated their first wedding anniversary. “He was God’s wedding 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 began to doubt whether it was just a case of bad cold because it kept happening every other week. We pushed the doctors to take more tests and that’s when they diagnosed him. We had not even heard of the disease. We still don’t understand the specifics. We only know that our baby’s life is in danger and that we need to save him at any cost,”-Vinayak, father
Baby Vishwaraj cannot even roll over on his ownDue to weakness as well as the pressure that his enlarged spleen and liver are putting on his upper body, Vishwaraj has not even started to roll over to one side of the bed. He cannot sit up on his own either. There is little to no chance that he will start walking soon either. He needs his mother for everything – from helping him pick up toys to play with to feed him as his palms have no strength. He keeps crying and wants his mother to rock him all night. As his blood levels can dip all of a sudden, doctors have also asked her to monitor him throughout for signs of paleness.
“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 something happens to me, I don’t know how he will survive,”-Asha, tearfully
He has been begging people in his village to help him, but nothing has come so far - he needs your helpVinayak 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 nothing in vain.
“When people ask us what is wrong with our baby, we are always at a loss of words. We try to explain his condition in the best possible way we can, but many are not convinced. They think it is not a serious disease. I am completely helpless at this point – please help me save my son,”-VinayakYour kind contribution will ensure that this baby boy gets a bone marrow transplant and survives