I work in a sugar industry in Lucknow and I earned enough for our small family - my wife Reshma, and two children Aditya and Kayra. Though I work in a sugar factory, I only have seasonal employment of about 6-8 months in the sugarcane season. When I am unemployed in the summer, it becomes a little difficult to make ends meet. I have always tried to save as much as I can in the productive months.
Problems started soon after Kayra’s birthEven before Reshma was released from the hospital after delivery, Kayra was diagnosed with jaundice. She was kept under 3-days observation. Then, we took her home and she seemed healthy. But Kayra began suffering soon after. In a month’s time Kayra’s body was not only showing strong signs of jaundice, but also her fevers kept recurring.
We took her to PGI, Chandigarh, where she was diagnosed with biliary atresia, a liver condition where the liver develops a severe infection. At the age of just 80 days, my little baby needed a liver surgery. After the surgery, the doctors said that Kayra would live a healthy life just like any other baby her age. But since last December, she has been suffering again.
Since birth, Kayra has suffered from fever, cough and cold and severe jaundice. Her bilirubin levels keep on fluctuating and right now it is 30 (normal range is 1-20µmol/L) and this scares us. She is too small to express her pain. She keeps crying all day; has bruises from injections all over her body. She is irritable and sick.
There are people who can help us, but they don't want toMy income of 6-8 months is not sufficient to run my family for the remaining months. Since Kayra’s birth, I have been spending a lot of money. I have spent all my savings and now I am left with no money. The saddest part is that our families and relatives will not come forward to help us. Their reason to not help, has left us in shock. Kayra is a girl and they are not ready to help a 'girl' child. Had it been Aditya, my son, they would have readily helped.
Kayra knows the hospital much better than our own home. It breaks our heart to see our little baby go through so much pain. Since last December, her fever has been recurring again and the liver infection has aggravated. The doctors say that if Kayra doesn’t undergo liver transplant as soon as possible, she is most likely to suffer liver failure and we won’t be able to save her.
Everyday we look for ways to gather funds for her treatment. I don't have medical insurance from work which would have been of some help. Reshma and I are absolutely lost and we don't know how to save our one-year-old baby. We have been fighting for her from when she was born because our families don't favour a girl. We want her to grow up and fight for herself. We can’t afford to lose her to a disease.
The disease is taking control over KayraEven though she can't speak, we can see the pain and fear in her eyes. She holds on to us with all her might. She refuses to consume even liquid diets and that has made her very weak. Doctors have also said that if the transplant doesn’t take place quickly, she will stop consuming any food and that would be deadly. It will be very difficult to save her.
After Kayra was born, Reshma and I have been preparing ourselves to go up against all odds and give our children the best of everything. Aditya and Kayra are our hopes and we dream of their success and happiness. Kayra has a long way to go and I simply can’t let a disease take her life. She is too small to suffer this much pain.