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Seeing my child's life swinging between survival and death petrifies me. My son has been afflicted with something we've never heard of. Everything that has been told to us about the rare disorder scares us to the core. He cries in pain, and we cry for his denigrating life. Chinmayi Sai Durga Mahesh, my 3-year-old son, has a rare life-threatening disorder called Griscelli syndrome with Primary Hemophagocytic Lymphohistiocytosis. Griscelli syndrome is partial albinism with immunodeficiency, and Primary HLH is a condition where the cells of the immune system called T and NK cells (cells that fight infections) do not function properly. An Allogenic Bone Marrow Transplant is the only way out, but the estimated cost is about Rs. 12 Lakh (USD 16,548) and we cannot afford it.
I am Shivarani, the mother of Sai Durga. We come from Ongole in Andhra, and my husband is a farmer. His daily wage is Rs. 300 (USD 5). A year ago, my son suffered from a severe fever. We took him to various hospitals in Gudur and Ongole, and it was in Chennai that he was diagnosed with this uncommon condition. Since then, we've been travelling back and forth from Andhra to Chennai for the injections. Fortunately, there was a 10/10 match for bone marrow transplant with his elder sibling and my daughter, Rukmani; we are praying relentlessly for his cure. All this has had an effect on my son's behaviour; from being playful and joyous, he's become dull and cranky.
With such a meagre income, we have nowhere to go to get the money. Since we'd been consulting a doctor in a government hospital, we did not have much to pay except for the travel. We are in a depressing state; Rs. 12 Lakh (USD 16,548) is out of our league, and we are absolutely clueless. His chances of survival would become very bleak if we don't get him treated now.
We have no other option other than requesting for your help. Our child is in pain and we have no other option than asking for your help.
Chinmayi Sai Durga Mahesh is like any other child. He deserves a happy and healthy life. Let's join hands to give him that. Any contribution from your end can make a huge difference in the child's life.
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