When Donya was a little over two years old, she developed a fever that just wouldn't go away. Numerous doctors visits and lists of medicines that she took were fruitless. Her fevers kept coming back. She only got weaker and unresponsive. Her condition disintegrated from there on. She started to faint often, but no one was able to give us answers. Both Vikas and I are not educated enough to understand any sign of a major ailment. But as they say, a mother’s heart knows it all. I knew something was not fine with my baby.
I insisted that we go to a good hospital and get her a full body check-up. Tests confirmed that my little one had Thalassemia Major, a severe genetic blood disorder where the body fails to generate haemoglobin for red blood cells. Doctors said that the treatment for this condition included blood transfusion and that it should have been administered to Donya much earlier.
Donya started blood transfusions. We were first told that the transfusions would give Donya a few more years at best. However, a recent check-up revealed that the transfusions had caused iron to accumulate in her body and was affecting her organs. We would never want to give up on our beautiful, always smiling girl, but it seemed like all hope was lost.
Finally, there was a sliver of hope – Donya could be saved with a bone marrow transplant and we were determined to do everything we could to make sure she gets the life-saving treatment. Kushank, our younger son, got tested to see if he could be a donor. Sadly, the tests revealed that he too has Thalassemia. Only one thing ran through our minds- did this mean that we would lose both our children?
We knocked on many doors of our neighbours and relatives to ask them for help, but they all refused. They asked us why we wanted to save our girl child. I couldn't believe it. No one came forward to help us only because she's a girl. We're now at a dead end.
I don’t remember the last time I felt happiness. Donya tries to make Vikas and I smile, however. She touches my cheek gently when I'm very sad. As if she's the adult consoling a child. As parents, we wish to shield our children from every harm. But both now are children are living through a nightmare. I'm wracked with guilt because the only way to save my daughter is something we will never be able to afford. We're standing in the way of her recovery and I will never forgive myself if we lose her for this.