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“My son’s disease has only one cure – a bone marrow transplant. He did not have siblings, so we tried to have a baby. Twice we had to abort since both babies ended up having the same disease. Finally, when our healthy daughter was born, we found out that she is not a match.”
I’m Shantakumari. My 3-year-old son, Ritesh, has been suffering from a genetic blood disorder called Thalassemia. He will be severely anemic for life. Imagine, when his organs do not get oxygen because there is not much hemoglobin in his blood. His whole body gets affected. His condition is getting worse, and we have exhausted everything we have on the blood transfusions he needs every 15 days. Now, he needs a major surgery to survive.
My son spends most of his time around blood in the hospitals
When he was 3 months old, Ritesh stopped having milk. He used to look so pale. I got very worried and took him to a doctor who tested his blood. We found out that he was anemic. That was the first time he had a blood transfusion. The problem continued and we were referred to CMC Vellore where a genetic test showed that both my husband and I had the Thalassemia gene, because of which our child is now suffering.
Ritesh needed blood transfusions every 20 days back then. He would sleep through the day when the hemoglobin levels went down. His spleen would enlarge, eyes would swell, and he would sometimes even turn yellow. I cannot tell you how many times we have had to admit him to the ER.
There is always an obstacle on the path to the cure
The cure? Bone marrow transplant. Often, they choose a sibling to donate. He was our only child back then. To save his life, we tried to have another child. It was heartbreaking, but I had to abort twice because the fetus ended up with the same disease. As a mother, I cannot even express what I went through. When our daughter was born, it was traumatic to hear that she was not a match. I am glad that she is healthy.
We opted for the donor registry. There was no close match to what Ritesh needed. The only option now is haplo-identical bone marrow transplant using me as a donor. It is an expensive procedure and the only way to save my son.
He will not have a childhood if this continues
Almost 4 years old, Ritesh is full of energy and enthusiasm now. It is hard to make him sit in one place. He bounces off the floors and walls. At this age, that is how children are. The downside to that – he gets exhausted very easily and needs transfusions every 10-15 days.
The minute we step into the hospital, he makes me promise not to let the nurse prick him twice with the needle. ‘One time, Amma. Please, it hurts if it is too many times’ he says. He knows that he is not well and he cooperates with the staff. He does not even cry when the needle goes in unless they miss and try again. Should he really be this way at this age?
How can you help
My husband, Anjaneyalu, is a school teacher in Ananthapur. He is struggling to earn every rupee so we can save Ritesh. I’m by myself here in Bangalore with my 8-month-old daughter and 4-year-old son, fighting this war, while my husband is struggling on his own there. The surgery is estimated to cost over Rs. 36 Lakhs.
We need help to keep our son alive. Your contribution will help us get through this nightmare.
