Just two months ago that Sthuti was diagnosed with this rare diseaseOne day, while returning from school, Sthuti noticed that her nose was bleeding. She wiped it away with her handkerchief and even tried washing it off, but the bleeding wouldn’t stop. She went running to her parents who made her lie down. In a few hours, she got a fever too.
“She was very scared. She hadn’t seen such a lot of blood in her life before. She thought she was going to die. Tests showed her platelet levels were very low and that her haemoglobin count was only 9. I couldn’t understand how this could happen to Sthuti. Nobody in our family has anything like this. She is too young to go through such difficulties,” laments Kamala, Sthuti's mother.
‘We blame our own lack of education for what our daughter is going through’Kamala, used to do odd jobs as a helper in a garment factory and a food-packing unit, before Sthuti was diagnosed. Her father, Arjun, works in the housekeeping section of a private company in Bengaluru. “We are not even class-10 pass. Perhaps that is why we thought her occasional nosebleeds in the last two years were due to the summer heat. To think that our ignorance may cost us our daughter’s life frightens me."
Sthuti doesn’t know when she will go back to school nowSthuti has not gone to school in two months. She longs to study and meet her friends, but even the smallest infection can kill her. She is quite weak too because of the weekly blood transfusions and her medicines. For a 9-year-old, this condition is nothing less than a prison sentence.
Sthuti prays to God daily to make her all right so that she be normal againSthuti thinks that she has no blood at all. She is too young to understand the minute details of her condition, but she knows she will fall very sick if she doesn’t take her medicines regularly. She closes her eyes and prays every time they put a needle in her.
She wants to go back to being the bubbly girl who played with her 14-year-old brother Rohan and 12-year-old sister Anjali. Nowadays, she can hardly giggle without feeling tired and exhausted. But her smile has not disappeared as she is hopeful that she will be okay again.
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"We tell her that a surgery will make her all right again. But she doesn’t know that the surgery she requires is no ordinary one – it is a bone marrow transplant. How do we tell her that the total cost of the surgery is hundred times what her dad makes in a month? I don’t want her to know all our hardships. But if we keep waiting for the surgery due to lack of funds, anything can happen,” –Kamala.
The total cost of the bone-marrow transplant that Sthuthi urgently requires costs Rs 30 lakh rupees – a sum her parents cannot afford. They have tried borrowing from friends and family, but they are still short on funds. Little Sthuti’s condition can turn critical at any point now.
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