“We cannot even scold her for any mischief she does because the minute she starts crying, she collapses immediately. She also gets vomiting tendencies if we put a lot of stress on her. So, we don’t do that – we pamper her and give her as much love as we can. Because that’s all we can do.” - Divyadurga, mother.
Devarshi is suffering from a rare blood disorder called thalassemia major, because of which her body produces lower-than-normal amounts of hemoglobin and red blood cells. She has been undergoing regular blood transfusions from infancy, but that is not going to sustain her for long.
Little Devarshi is going to be 5 in a few months’ time. But like other parents, Kalidas and Divyadurga, are not preparing to celebrate it with a big party with near and loved ones. They are hoping desperately to arrange enough funds for a bone marrow transplant that could cure their daughter's blood disorder.
Doctors have clearly told them that she needs to undergo it before the age of 5 for it to be successful, and for her body to be receptive to it. If not, her condition can turn critical quickly due to increased deposition of iron in her organs, like her heart and liver, as a result of regular blood transfusions.
‘Only we know how we managed to keep her alive through the pandemic’Devarshi was diagnosed with the blood disorder when she was just 6 months old. Her parents noticed that she was not able to drink milk as she would vomit as soon as she suckled. She wasn’t growing well either. A couple of blood tests later, the doctors' diagnosis had left them heartbroken. And since then, these parents have been scrambling to keep their daughter alive each month with blood transfusions.
“The COVID pandemic was the most stressful time for us, as parents. We were not able to find centres for her to get her blood transfusions and even if we did, we had to take great care when transporting her outside as she is very prone to infections due to her condition. We thank God we were able to keep her safe.” - Kalidas, father.
They have found the right place for treatment…but do not have enough fundsKalidas and Divyadurga recently took Devarshi to Chennai from Vijayawada, where after tests, they learned that Divyadurga could be Devarshi’s donor. They were happy to know that they did not have to find a matching donor outside the family, but they sadly do not have the funds to proceed further with the treatment that could give their little girl a new life.
“I abandoned my job for my daughter as she needs me all the time. My mother is old and still works as a daily wager to help us. I have mentally-challenged siblings. My wife has a small job as a volunteer in government schemes where she just earns enough for us to eat. Our child stutters, speaks slowly, and sleeps all day. She cannot eat anything she likes because of this disease and is yet to start school. But we are hopeful that she can live a long life with this procedure. Please help us make that happen.”- Kalidas.
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