"I try to clean the blood on his face with warm water, but he starts screaming in pain. His skin is peeling all over, and he is always crying out of pain. Seeing blood is normal for us now and we would not even know when it becomes more dangerous." - Khusboo
Aditya has been in pain since he was in his mother's womb. 2 days after birth, he began having bloody diarrhea. It has been 3 years since, and his condition has only worsened with vomiting, bleeding and recurring infections. Aditya has Wiskott-Aldrich syndrome because of which he has a very weak immune system and reduced ability to form blood clots. He can beat the disease with a stem cell transplant, but he may never get it.
They are surviving on borrowed money and borrowed timeAlone in a strange city, Khusboo Kumari shuttles between the hospital and their rented room, every day. She barely has money to call her husband to update him on Aditya's health. The baby boy received his diagnosis of Wiskott-Aldrich syndrome only 3 months ago. He has been suffering from bloody diarrhea, vomiting, and eczema for years now.
"From our village to Patna to Lucknow and finally Mumbai, I went to so many hospitals to find out what was wrong. A baby can't have infection for 3 years with no medicine to help. Doctors back there did not know what was affecting him. At a point, they said there is nothing they can do. Now we know, this can kill him and there is a way to stop it." - Khusboo
The air he breathes is enough to infect himAditya's platelet levels keep dipping every week. He needs blood transfusions. His body is extremely weak. Last year, he had to be admitted to the ICU for 15 days after losing so much blood. Even though they have taken all precautions in maintaining a sterile room now, Khusboo cannot avoid taking her son to the hospital. The air he breathes outdoors is enough to infect him again. He has a persistent fever. Knowing there is a cure does not make it any easier.
"It hurts him if I hug him but he wants me to hold him all night every night. It is the only way he stops crying. My 5-year-old daughter and I have not slept in weeks. We are all now struggling to keep Aditya alive." - Khusboo
He can communicate only through his criesAditya cannot really speak. He cannot tell his mother if he has a stomach ache, or pain from the swelling in his face. It is becoming increasingly difficult to decode his cries, mainly because he has several symptoms. Aditya needs to be watched over every minute. Bumping his head on the floor while lying down can cause a brain bleed. If he trips over while walking to his mother, he could bleed to death. Khusboo cannot put him down on his own, but she also has another child to care for.
Khusboo does not know how long she has to save her son
"My daughter is here with me because she is the donor. Still, we cannot go ahead with the transplant until I have the money. Every day we spend Rs. 1000, sometimes Rs. 1200. I think, soon I won't even be able to feed my children. In the time we have been here, I can see my son getting worse. We don't know how long he has now." - Khusboo
This is her plea for helpPremkumar's income of Rs. 7000 currently takes care of food, rent and travel expenses for the family. Khusboo has been borrowing from strangers and loan sharks to fund medicines and hospital expenses. Over the years, they have spent more than Rs. 4 lakhs which is more than 4 years of Premkumar's salary. They know, that they will never be able to save or afford Rs. 16.5 lakhs. Time is running out, and they need your help.
"My husband cannot afford to take leave and come be with us. He already lost one day's income when he came to give me money. His salary is what is keeping us here. I can only go with the transplant when we have enough money. I cannot save him without your help." - Khusboo.Aditya has known only pain since before birth. The disease will break him completely and then take his life if he does not get this transplant.