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"I don't know for how long I will be able to save my children from the clutches of death due to this incurable disease. Each day without a complication is a blessing for us. It gives me chills thinking of the day when our luck might run out." - Hemraj, Father says worriedly.
These children were born with a rare genetic disease that caused uncontrollable bleeding
Hemraj and his wife were very happy when their son was born in 2014. Two years later they were blessed with a daughter. Life seemed complete and filled with happiness. Unfortunately, the tables turned pretty soon when one day, their son suddenly cried out in pain with a severe headache and vomited. Even before they could understand what had occurred, he fainted. They immediately rushed him to the hospital."We had no clue what had happened. The doctors conducted various tests and told us that our son had bleeding in his brain. He had a genetic disease due to which he could bleed internally without an injury and the bleeding would be very difficult to stop on its own. We were shocked to hear this diagnosis. Fortunately, he survived that dangerous bleeding episode." - Rajkumari, mother, recalling the horrifying event
Before they could adjust to what had happened, their daughter too got diagnosed with the same disease.
The children were diagnosed with Factor XIII deficiency - a rare, genetic bleeding disorder characterized by deficiency of specialized proteins that are essential for the blood to clot properly. This disease has no cure, but fresh frozen plasma transusion can help manage the condition and reduce the chances of continued bleeding. Amid their son's treatment, a year later, their daughter started experiencing severe pain in her belly. They took her to the hospital where the doctors confirmed that she too had bleeding in her belly, due to the same condition as their son's. They were devastated."I think we must have done something horribly wrong in our past lives, that we are being punished so severely. My little daughter too, had that disease. I couldn't believe it when the doctors told us this diagnosis. She would also need a life-long plasma to survive. I felt guilty for giving this disease to my kids" - Rajkumari, breaking down.
The treatment costs for both children are too much for the parents to handle
Over the course of the last four years, these children have undergone numerous plasma transfusions, a critical measure required to prevent severe bleeding, as there is currently no other available treatment. The necessity for plasma transfusion still arises every four weeks. Both children rely on constant supportive care for survival, and this prolonged treatment has drained the family of all financial resources, exceeding Rs 25 lakhs in expenses.With each child needing admission approximately 13 times a year and to sustain the ongoing treatment, these parents are in urgent need of additional funds to meet upcoming expenses. The estimated cost for the essential transfusions and associated supportive care is INR 9 lakhs, per year.
Hemraj works as a repair mechanic at an automobile shop. He earns INR 20,000-25,000 per month which is barely enough to manage the household expenditure. The treatment incurs an expenditure of INR 35,000 per month for each child. They had somehow managed it until now by taking loans from relatives and friends. But, now no one wants to help.
"I have spent INR 8-10 lakhs on their treatment till now by taking loans. But, I cant afford the treatment anymore. I have nothing left. No one even picks up my calls these days fearing that I would ask for money. I feel helpless when my son asks me about what would happen if the money for their treatment is not arranged. What do I tell him?" - Hemraj, Father, breaks down
The parents have lot of hopes for their children
Though, they couldn't afford a private school, Hemraj and Rajkumari did not spare any efforts when it came to getting their children educated. They sent them to a government school. Despite the lack of resources, the kids managed to continue learning. But, the disease often slows them down due to various symptoms like sudden paralysis, difficulty in speaking, understanding the lessons, etc."My son tells me that he wants to join the army to serve the country, while my daughter wants to be a teacher and teach the kids like her who cannot regularly go to school. I feel proud listening to such ambitions, but I wonder whether will we be able to give them an opportunity to fulfill their dreams?" - Rajkumari, mother
Their kids are all they have, hep them save them from this dreadful disease
"Our kids are everything to us. We cannot even imagine our lives without them. God forbid, if something happened to them, we would never be able to forgive ourselves. Now, we're just hoping for a miracle to happen, so that we don't lose our children." - Hemraj, father.
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The identity of the children is protected in adherence to the government guidelines.
