“It happened so suddenly, we are still not able to assimilate. My daughter was awake and talking. Now that machine is breathing for her, and she is not even conscious. I cannot breathe until I know she is going to be alright.”
4-year-old Yashica is everyone’s darling as the youngest in the family. It rocked the family when they discovered that she has a terrible illness that is destroying her lungs, and slowly taking her life. Yashica is on a high-frequency oscillatory ventilator and heavily sedated because her condition is very critical. She has Pneumonia with Acute Respiratory Distress Syndrome and she needs intensive care until she recovers.
“She had rashes on her forehead. We took her to the dermatologist. It was the natural course of action. She did not show any improvement even after the doctor treated her, so we moved on for another opinion from a pediatrician. Even that did not help. So, I took Yashica to the hospital where she was born. For 2 days she was admitted there. After running a few tests, the doctor suggested we move her to a pediatric specialty hospital.”
Here, Saravana (father), consulted with a rheumatologist as Yashica began to have muscle and joint pain. She was unable to take the stairs, walk or even sit down to use the toilet. Eventually, she had to stop going to school. Finally, after a long investigation, an MRI scan revealed that Yashica has Juvenile dermatomyositis (JDM), a rare autoimmune disease that threatens her life.
“Although we had the diagnosis, we were not getting closer to the cure. She had a fever and the pain worsened, along with the rashes. She came down with pneumonia and could not breathe. Her immune system is attacking her and now her lungs are damaged completely. My daughter needed ventilator support just to stay alive. Only after she gets better, we can start treating the disease.”
Saravana and his wife, Nadia, are torn up about their daughter’s condition. They left their hometown and are currently in the hospital with Yashica. These parents have been unable to respond to anyone properly due to the emotional trauma. All they want is to see Yashica smile, laugh and skip around the house as a healthy child.
“She was never really scared. Every time when we went to the hospital, all she would ask is ‘Are they going to take my blood again, Appa?’ She got used to taking her medicines. She would cooperate with the doctors. Even when she was scared, she would listen to our voice and calm down. She believed us when we said everything was going to be alright. Now, we don’t know what the future holds for us, for her. We don’t want our daughter pulled away from us.”
Yashica’s older sister, Harinishree is living with her grandparents. She is anxious about her sister’s health and wishes for her to come home soon. Although there is a baby cousin in the house to keep her distracted, an uncle says that Harinishree keeps asking for her family and updates on her sister’s condition almost every hour.Harinishree is living with her grandparents. She is anxious about her sister’s health and wishes for her to come home soon. Although there is a baby cousin in the house to keep her distracted, an uncle says that Harinishree keeps asking for her family and updates on her sister’s condition almost every hour.
“I was freelancing for banks as a salesperson. Ever since this happened, I have not been able to go to work. I am needed by my daughter’s bedside. All my savings have gone into paying medical bills. So far I have paid Rs. 90,000 on the bills. Every day her medicines are costing Rs. 20,000. My relatives have been helping me out so far. But, we need a large sum and I do not have the resources."