Instead Of Undergoing Life-Saving Transplant, This 5-Month-Old With Rare Disease Is Counting Her Last Days At Home | Milaap
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Instead Of Undergoing Life-Saving Transplant, This 5-Month-Old With Rare Disease Is Counting Her Last Days At Home

“My baby is just 5-months-old and her tiny body is suffering from a rare disease. While it has been threatening to take her life every minute, but I had no choice but to take her out of the hospital. I didn't have the money. She will not live without an urgent transplant. I feel dreadful for being helpless while death is haunting my girl. Without the support of strangers I cannot save my only child, please help me,” - said Suresh (Nayonika’s father) with tears in his eyes.

With each passing day, Nayonika is only getting closer to death

Nayonika is suffering from a rare disease called griscelli syndrome, a condition that causes immunodeficiency. It makes the person susceptible to even small infections and can affect the brains function which can cause death if not treated in time. Nayonika underwent chemotherapy treatment only for two months which stabilized her haemoglobin count. But, she doesn't have much time, if the count decreases nothing can save her. She needs the bone marrow transplant. This is her last chance at survival. 



“When my daughter was just 2-month-old she had high fever and medicines did not improve her condition. Many hospitals couldn't diagnose the problem and only after a month our questions were answered in Bangalore. But we were already late. Her condition was at an advanced stage and she was critical. But unfortunately I could only afford two months of treatment,” - Suresh.

‘I hide her silver eyebrows using eyebrow pencil’

“When the doctors confirmed my pregnancy, I couldn’t wait to be a mother. I dreamt of grooming and dressing my baby in the best clothes. I was happy to be blessed with a baby girl. As soon as her hair grew, I bought all the hair accessories and groomed my little angel. She loved her colourful clips. But now, the deadly disease made me shave her head and paint her eyebrows in black,” - Redamma, Nayonika’s mother.



The fatal disorder has not only changed this little one’s hair colour but also made her appearance deceptive. Intense chemotherapy makes her look healthy. People think she is very chubby but only the couple knows the ugly truth behind it. The side effects of the treatment has only made her sick by the day.

“It hurts to see when she pukes everything immediately after drinking milk and this leaves her hungry for more. At times, I cannot feed her the amount of milk she requires, I try to distract her but nothing works. She cries until I can feed her milk again,” - Redamma.

‘Too many leaves had left me with nothing in hand to even feed my family’

Suresh works as a supervisor in Rajampet municipal corporation. With his earnings of Rs 10,000 he can only manage to feed his family. With no savings, he borrowed around 4 lakhs with huge interest. To save his daughter from the fatal disease he needs more than 40 lakhs and the expenses are beyond his means.



“I was forced to take multiple long leaves to run around the hospitals. Because of which my salary was deducted and I might soon lose my job too. I hardly have anything with me now. I am unable to provide meals to my wife who should feed my sick baby frequently. I borrowed from my relatives to afford meals to my family. And on the other hand, my baby is left with very little time and in this short notice I am unable to arrange money for her treatment and her transplant. Please help me save my baby before it’s too late,” - Suresh.

Baby Nayonika can only survive with help, your kind contribution can save her life.

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.

Click here to save Baby Nayonika.