“Our kids are inseparable. One won't go to sleep unless the other one lies beside her. They do everything together even if it's going to the hospital. The sad part is that they are suffering from the same disease.They even hold each other's hand while getting injections. It breaks my heart to think that if I can't continue their treatment I will lose both my children. I can't imagine a world without them but there is no way I can afford this, - Hemraj, father

Within a span of 1.5 years, their children fell ill from the same disease

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. But as time passed, their happiness turned into worry. One day, their son fell terribly ill. His head hurt so much, and he started vomiting. Rushing him to the hospital, they received a shocking diagnosis – a rare illness causing severe bleeding in the brain. As they coped with their son's sickness, fate dealt another blow. Their daughter also fell victim to the same cruel disease. She suffered from internal bleeding, and the family's life was never the same again.

They were born with a rare genetic disease that caused uncontrollable bleeding

The children were diagnosed with Factor XIII deficiency - a rare, genetic bleeding disorder characterized by the deficiency of specialized proteins that are essential for the blood to clot properly. This disease has no cure, but fresh frozen plasma transfusion can help manage the condition and reduce the chances of continued bleeding.

I can’t help but blame myself for my children’s condition but no one warned us before


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.

The treatment costs for both children are too much for the parents to handle

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

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.

The brother and sister are fighting a dangerous disease please contribute with open arms so that these kids can live long enough till a cure is found for their illness. 

Supporting Document

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.