Help My Baby Fight Griscelli Syndrome | Milaap
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Help My Baby Fight Griscelli Syndrome



‘Your baby looks so chubby, she is so cute’ - that’s all Suresh and Redamma hear when strangers look at little Nayonika. The parents know they deliberately don’t mention her grey hair. She is 5-month-old and is suffering from a dangerous rare disease. The only thing that can save her life now is an urgent bone marrow transplant.

“She needs to be in the hospital right now, even staying at home can give her dangerous infections. But I can’t afford for her hospital stay, I feel helpless and angry at the same time.” - Suresh, father.

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


Nayonika is suffering from a rare disease called Griscelli syndrome, an inherited condition characterized by unusually light skin and silvery-grey hair starting in infancy. She is susceptible to even small infections. The disease can cause death if not treated in time.



“It was just a fever, we thought she would be fine soon. But instead of getting better, my baby only got worse. She was very weak and always running at a high temperature. Finally, a month later, doctors in Bangalore told us that she has a rare disease. The worst thing was that we were told that she was at an advanced stage of the disease. I could see all my dreams and hopes about our child shattering in front of my eyes,” - Redamma, mother.


They shaved off her hair, her eyebrows are all grey - this was not what I had in mind for my baby


"When the doctors confirmed my pregnancy, I couldn’t wait to be a mother. I dreamt of 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.

The little baby can’t even eat to her heart’s content. She pukes out every time her mother feeds her. This is only making her weaker with every passing day.


I can’t afford two square meals for the family, how will I save my baby?


Suresh works as a supervisor in Rajampet municipal corporation and makes around Rs 10,000 a month. With no savings, he borrowed around 4 lakhs with huge interest. But to save his daughter from the fatal disease he needs more than 40 lakhs

“I could hardly go to work once Nayonik started falling sick. I might soon lose my job too. My savings are now over and I am unable to even afford our daily meals. I borrowed from my relatives but my baby is left with very little time. In this short notice, I can’t arrange money for her treatment and her transplant. Please help me save my baby before it’s too late,” - Suresh.


Baby Nayonika can survive with your help.



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6th August 2019
Dear Supporters,

We have some unfortunate news to share with you all today. We regret to inform you that despite all the treatment,  Baby Jakkalla could not make it and she passed away on 5th August 2019. She underwent the transplant on 13th July 2019, however, post that her health was unstable and she passed away in her hometown.

Our prayers are with her family and we pray for her soul to rest in peace. All the funds raised have been utilized towards her treatment.

Regards,
Sneha
Dear Supporters,

We have some unfortunate news to share with you all today. We regret to inform you that despite all the treatment,  Baby Jakkalla could not make it and she passed away on 5th August 2019. She underwent the transplant on 13th July 2019, however, post that her health was unstable and she passed away in her hometown.

Our prayers are with her family and we pray for her soul to rest in peace. All the funds raised have been utilized towards her treatment.

Regards,
Sneha
29th July 2019
Dear Supporters,

Thank you all for the wonderful support.

Baby Jakkalla underwent a stem cell transplant on 2nd week of July. Post transplant, during the recovering stage, the baby suffered a cardiac arrest and was resuscitated in the ICU. She has sepsis, shock and acute kidney injury and she is now recovering. She needs intensive care for the next few days.

Here is a letter from the hospital:



Please share the campaign and help Baby Jakkalla recover. We thank you all!

Regards,
Sneha
Dear Supporters,

Thank you all for the wonderful support.

Baby Jakkalla underwent a stem cell transplant on 2nd week of July. Post transplant, during the recovering stage, the baby suffered a cardiac arrest and was resuscitated in the ICU. She has sepsis, shock and acute kidney injury and she is now recovering. She needs intensive care for the next few days.

Here is a letter from the hospital:



Please share the campaign and help Baby Jakkalla recover. We thank you all!

Regards,
Sneha
19th June 2019
Dear Supporters,

We thank you all for supporting our baby.

She is undergoing pre-BMT preparation and the doctors have planned to admit her for the transplant in the next week.

Please keep her in your prayers. Thank you all!

Regards,
Suresh Jakkala
(Father)



Dear Supporters,

We thank you all for supporting our baby.

She is undergoing pre-BMT preparation and the doctors have planned to admit her for the transplant in the next week.

Please keep her in your prayers. Thank you all!

Regards,
Suresh Jakkala
(Father)



Content Disclaimer: The facts and opinions, expressed in this fundraiser page are those of the campaign organiser or users, and not Milaap.
Rs.0 raised

Goal: Rs.1,500,000

Beneficiary: Help Baby Jakka... info_outline