“It has been two months since Nusrath has slept peacefully. She cries incessantly throughout the day. We take turns to rock her in our lap, but then again her ulcers hurt, the pain becomes unbearable, making her scream and scratch with agony. She pulls her hair and mine or whoever is carrying her, and it pains me to see her like this.” - Taslim
Nusrath is just 10 months old, but she suffers from a rare genetic disease called Leukocyte Adhesion Deficiency Type 1 (LAD). Nusrath has a recurring bacterial infection which threatens her life. They start from the skin and then attack her immune system, finally cause multi-organ failure.
Ulcers are slowly taking over Nusrath’s body and just medicines are not enough
It all started when Nusrath was 8 months old. Nusrath's mother says, “It started with the ulcer, we initially thought it was just a skin abrasion, and sooner or later with some ointment, it would go away.” But it did not, the ulcer kept multiplying, and Nusrath developed more symptoms like severe diarrhea, fever, cold and flu.
In the past 15 days, she has developed visible ulcers in her eyes and the anal area. The pain makes her cry, the tears hurt her eyes. She has an extreme case of diarrhea making the perianal ulcers unbearable. She is just 5 kgs, whereas a normal child should have been around 9 kgs. Her white cells are also extremely high, much higher than a normal person - around 1 lakh, but the disease has rendered them useless. As each day proceeds, Nusrath becomes weaker. Her immune system turns defenceless, and organs start failing one by one.
The only solution to stop this life-threatening disease from spreading, is a bone marrow transplant according to the doctor in Aster. And the required amount for this procedure would be around 15 lakhs.
They cannot afford to even move her to a better hospital where she can find a cureNusrath’s parents belong from Adoni, a small town in Andhra Pradesh but for the past two months, they have not seen their house or their other two kids who are 5 and 3 years old respectively. Ever since Nusrath’s disease has surfaced, her father Mastan has been running around from pillar to post figuring out a way to stop the infection and asking help from people.
Mastan, says, “We first went to Bellary, but the doctors there did not know what was wrong, so they asked us to move to a hospital in Bangalore. It’s been over a month now that we have admitted Nusrath in the hospital, but even there they do not know what exactly to do in a case like LAD.”
Nusrath's parents want to move her to Aster CMI, where she can get better treatment but due to the financial crunch, they have not been able to do so.
They have one bank account and it has always been emptyMastan works as a welder in his town and earns up to 9000, while Taslim takes care of the three kids. Over the past 2 months, Mastan has already spent Rs. 70,000, out of which he was only able to give Rs. 20,000 on his own. The rest of the money he loaned from friends and relatives from his village. Mastan does not have a bank account and knows very well that he would not be able to get a bank loan even if he wants.
“My wife has a bank account, but it is empty, it has always been empty. I do not have any other savings or anything that I can sell.” - Mastan
Returning to their village, only to watch their child die, is not an optionAccording to Taslim, although the infection has reduced a little on the skin, it has spread in her cornea, which is making it difficult for Nusrath to see.
As Nusrath tries to get some sleep in her mother's lap, Taslim says, “We have done everything that we could from our end, and we are still doing it, but I don’t know what next if we fail to raise the money. We might have to return to our village, but that is not something we want. I don’t know what more options do we have, after all."
Nusrath’s parents are just looking to save their daughter and give her a life that she deserves. They need your help.
They want to see her smile, go off to school, grow up like her other siblings and live a life. You can help save Nusrath life, with your contribution.
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.
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