They put a price on the life of a child. 7 months old and suffering from a disease I couldn't first comprehend, my son is fighting for his life. I wish the world was different. I wish they would save his life because every child’s life is precious.
When he was 4 months old, my son had a high fever. I thought it was probably a viral infection. It turned out to be something much bigger than we could have ever imagined. Vygith has Osteopetrosis. He was born with a condition where his bones are getting harder because of which his bone marrow is also getting blocked. He is surviving because we run to the hospital to get blood transfusions to keep him alive.
Most children who have this disease and go untreated die by the age of 2. If we want to save our son then we need to get stem cells from another person’s bone marrow transplanted into his body.
Pratish (husband) is a painter. His income is dependent on the number of contracts he gets in a month. He makes hardly Rs. 600/day twice a week if the workflow if good. When it was just the two of us, the money did not matter. I did not worry about anything changing even when our son was born. Our house is a make-shift tent. It may not be ideal but it is home. We are living in this thanks to a generous woman in the colony who has offered us a place on her land.
Vygith fell sick when he was 4 months old. He had a fever and got extremely weak. So, we rushed him to the doctor. He ran some tests and found that his blood cell count was abnormal. The doctor suspected blood cancer and tested his bone marrow which is when we discovered that he has a rare condition called infantile osteopetrosis.
1 in 200,000 people get this disease and my son is one of them.
When I heard this I felt depressed about our fate. My father is bedridden. He is fighting blood cancer. I have seen my parents fight and give up. Now he is slowly dying. Even people who can afford the best medical care would need financial help when they get cancer or any rare disease. We live on Rs. 1200/week. What chances did we stand at saving our child?
Vygith is our only child. Like any parent, we would want to do everything we can to save him, but our everything is hardly anything. In fact, our fate is so bad that neither I nor my husband is a match for donating our stem cells. We still have not found the right match in the Indian registry. The doctors are now looking in the International registry.
Thankfully, our neighbors and people in this community raised funds for us. They are the only ones who have held our hand through everything. But there's only so much they can do.
We came up with Rs. 2 Lakhs for Vygith’s treatment. So far we have shelled out Rs. 1 Lakh, and we have the other half left. His surgery is estimated to cost Rs. 27 Lakhs. We are at a loss for that kind of money. It makes me feel like my son has no chance of survival. Sometimes I feel the disease is winning over him because it picked a person who could not afford to defend himself.
When I look at my son, I forget he is sick because he is smiling and active all the time. Thank heavens for innocence and infancy! We were satisfied with being poor. This has been a wake-up call for us. We are going to work hard to make sure that his life is better.
Without treatment, Vygith can develop hearing loss, fractures, vision issues, short stature and recurrent infections. I have to take extra care of him so he does not contract any infection. If he does, with his current low count of Haemoglobin and white blood cells, his body cannot recover and he will lose his life.
He is just 7 months old. He is supposed to live a few decades of life before facing such terrible things. Please help me keep my son alive. There’s a price on my son’s life. Help me save him.
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.