"My son has been in pain for 14 years, watching doctors give up on him. He has been hearing people say that there is nothing left to do, and they suggest medical management for as long as his heart continues to beat, which may not be long. Imagine the life of this child – expecting death every minute. Would you ever wish it on anyone you know?"
19-year-old Diwakar does not remember a time in life when he was happy, healthy and normal. He has almost always been restricted to bed because of restricted cardiomyopathy. His swollen feet and bloated stomach do not allow him to stand or walk. Exhaustion is all he knows. Diwakar’s condition has worsened over the past few weeks and for the first time, a cure is in sight. A heart transplant can not only save his life but also give him a future that can make up for all these years of suffering.
Knowing what he had got us nowhere to the cure
It all began in 2004, when Manohara heard his son complain of severe stomach ache. He examined his stomach and was shocked to see that it had abnormally bloated. Fearing for his life, Manohar rushed Diwakar to a small local hospital which due to lack of facilities refused to admit the boy. They moved to a nursing home nearby where Diwakar was diagnosed with a heart condition. Unsure of the situation, the doctor referred him to Jayadeva.
“Heart condition, TB, Jaundice, hospital to hospital, medicines worth Rs. 3 Lakhs, surgery, no need for surgery, there is a cure, no cure… We have heard everything. Every year they would give us hope and take it away. At the time, medicine was not advanced. There were no transplants happening here. Furthermore, doctors would not even try. They’d say why are you struggling so much? We cannot do much for him.”
It is the worst when doctors give up on you
Amongst all the confusion, Diwakar needed an emergency surgery to fix a valve. A year later, his condition further deteriorated with increase in wall thickness. 5 times a year the family Diwakar would need hospital intervention.
“Maga beku andre ella madbeku. We were stuck without facilities and support. A doctor who watched us come to Jayadeva for 8 years told us to stop trying, take him home, give medicine to keep him comfortable and feed him until he dies, which will be soon.”
And so he just existed for 19 years
When the idea of death is reinforced so many times, eventually it seeps in. These parents discontinued Diwakar’s education when he was in 7th standard. They began to think about the boy’s future, and at the time it looked bleak.
“He would urinate frequently. School was not even giving him the required facility. I would drop and pick him up every day. He liked going because other children would be there. The teachers were vehement about giving him extra attention, and ultimately, we stopped sending him. He could not even walk or play. We felt it would just cause him more harm.”
Can you help?
At the moment, Diwakar’s body is retaining water so much that he is allowed to drink less than 1 L every day, and his chest is weighing him down as the heart muscles tighten. He is very weak and needs a transplant to survive the year.
Manohar is a painter. He makes Rs. 600/day and has two other children to care for. The money has always run out due to piling medical expenses.
This father is not ready to give up on his son. He needs your help.
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.