My name is Saloni Kumari, and my two children give my life brightness. But one morning, I woke up to find my daughter vomiting blood.
Since then, her life has been filled with pain she doesn't deserve.
Doctors Said She Has A Rare Disorder That Won't Let Her Blood Clot
When we saw blood, we rushed to the hospital. She said, "Mumma, I can't breathe," and fainted in my arms. But one after another, the doctors kept saying there was nothing they could do. Finally, a hospital in Delhi stabilized her with multiple transfusions and ventilator support.
After several tests, the doctors told us — she has Glanzmann Thrombasthenia. A rare genetic disorder that prevents blood from clotting. Her only chance to survive was a bone marrow transplant, which would cost 20 lakhs. We were completely shattered.
Now Both My Children's Futures Are In Question
My husband works 14-hour shifts and earns ₹15,000 every month. It barely meets rent and rations. The admission and medication had already taken everything we had.
To make sure we could keep paying her hospital bills, we had to pause both our children's schooling. Watching my children's future disappear so suddenly was unbearable.
Doctors Keep Saying We Don't Have Time, We're Constantly In Panic
We don't know when another bleeding episode will happen. The doctors say it could be in the next hour or day, but without the surgery, she may not survive the next time. We've already borrowed from our family and friends, exhausted our savings, and sold our jewellery, but it's still not enough. We can't even pay our rent. I'm scared our landlord will tell us to leave.
My husband cries every day, saying our genes did this to her, and we can't even help. At night, we just stay awake, unable to sleep, eat, or even talk. How she cries in pain is all we can hear now.
Her Brother Keeps Asking Us When He Can Play With Her Again
Our son doesn’t understand the full truth, but he misses his sister. Doctors tell us she shouldn't play or move around much. But he still keeps his chocolates and toys aside for her, hoping they’ll make her smile and come play.
I don't know what to say to his questions. When I'm at the hospital, he asks me, "If I give her this chocolate, will she come play with me?" And at home, he cries, saying, "She loves school, please let us go again?"
We've Spent 9 Lakhs Already, Another 20 Lakhs Is Out of Our Reach
We have no one left to borrow from. It took 9 lakhs to keep her alive on transfusions and medication. The hope we had has turned into silence. Now, I just sit by her side and pray she makes it through another day.
Please, don't let this genetic disorder rob her of her life. Please help save our daughter.
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EIN 20-5139364
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