“My husband, John Emmanuel, who is hard of hearing, had always managed to take care of our son Ronald, who was born with a rare and severe immune-deficiency disorder. But ever since he suffered two heart attacks - one back in 2013 and another in 2015, I have been single-handedly taking care of Ronald’s medical expenses by working as a teacher. Everything was going well until Ronald got really sick 2 months ago. Now he is paralysed and will die without a bone marrow transplant. I have not been able to go to work for so many days and I'm struggling to meet daily expenses. I want to save my only son, but our financial condition is deteriorating by the day.”-Nirmala, mother.
14-year-old Ronald’s condition was diagnosed only at 8 months when he turned blue from breathlessnessNirmala remembers having a normal pregnancy with Ronald. Scans and tests even after he was born did not point to anything wrong. But one day after he became 8-months-old, he became breathless and his whole body turned blue in color. His terrified parents rushed him to the hospital at once, where he was under observation for more than 48 hours.
“The doctors told us that there are slim chances of getting our baby back alive. I was feeling very confused and sad at the same time; I kept blaming myself for whatever he was going through. But when after a round of tests, the doctors told us that he had a rare immunodeficiency disorder, I felt even more helpless. But I swore that I would take care of him with whatever I had. And to this day, I have tried to do only that.”-Nirmala.
Ronald’s disorder never let him have a normal childhood, but he fought against all odds bravelyRonald has Hyper IG Syndrome, a scary and painful immune-deficiency disorder that gave Ronald a weak immune system. This meant that he could never go out to play like kids his age as he was prone to all kinds of infections, especially serious lung infections. There were days where he would get painful skin lesions and mouth ulcers (which would make him unable to eat). On other days, his skin would be so dry that he’d not stop itching. Additionally, arthritis would also make walking difficult for him. But this did not stop Ronald from being an achiever.
“Despite his health issues, my son was good at computers and has won many computer science Olympiads. He would also paint, he even loved playing the keyboard. My child even learnt cooking at one point to help me in the kitchen. Today when I see him lying on the bed in this pathetic state, tears well up in my eyes.”-Nirmala.
Ronald got a sudden leg pain 2 months ago that has now left him completely paralyzedRonald’s life had been sustained by immunoglobulins all this while. He would need one dose for every three weeks; without it, his body just wouldn’t function. After his father’s heart attacks, followed by bypass surgery, things had become really difficult for this family. Nirmala had to beg to make sure that her son would get his medicines on time. But she still managed to make sure that her son was live. But everything changed about two months ago.
“One day after school, he suddenly felt weak. He would usually ask me for food right after he reached home, but that day he went to sleep directly. He had become really weak. He stopped talking completely. He even developed a fever and leg pain; that is when we took him to a hospital in Vijayawada from our hometown in Machilipatnam. 3 MRIs and 1 lumbar puncture were done, but the doctors still couldn’t understand what was wrong. It was after we came to Chennai on 7th July that doctors said he would not survive without a bone marrow transplant.”-Nirmala.
How you can helpNirmala used to work as a schoolteacher, earning Rs 9,900 per month before Ronald became paralyzed. Doctors have clearly told this mother that her son would not survive without a transplant. But she does not have money for medicines anymore – how will she make enough money for the expensive transplant? Nirmala has to take care of her husband who is a heart patient as well, along with Ronald. She has been single-handedly fighting this battle and asks for your support to save her son.
Your kind contribution can help this mother save her 14-year-old son