“We believe that our Nagendra is no ordinary child. Even at 15-years-old, he is extremely mature. He knows how to handle critical medical situations. For instance, he once had a nosebleed that just wouldn’t stop - but he barely panicked - he knew exactly how to handle the unexpected nose bleed. Even when everyone around him is in a panic overdrive, he knows exactly how to calm us all down. He’s wise beyond his years”.
Krishna Kishore (Nagendra’s uncle)
Nagendra’s suffering starts
About a month after he was born, Nagendra started to develop infections, and he fell sick too easily and too often. Even as a newborn, he spent several months in Manipal Hospital in his hometown of Bengaluru, being treated for illnesses and infections. But his symptoms were so uncanny and random that the doctors weren’t able to piece together an exact diagnosis that explained his continued illnesses.
The shocking diagnosis
Nagendra was then referred to the Post Graduate Institute of Education and Research Centre in Chandigarh for further investigation. It was there that the medical professionals sent his lab tests and samples to France for further investigation. The result was baffling - he was diagnosed with a condition that his parents had never even heard of - Wiskott Aldrich Syndrome.
“We were told that Wiskott Aldrich Syndrome is a rare genetic disease. There was a heightened immune system deficiency that he was exposed to- there were significant changes in his white blood cells. This led to numerous complications including multiple immune and inflammatory disorders”.
Critical battle begins
Following the diagnosis the (then) 4 month old was recommended a bone marrow transplant. Since he was just 4-months-old, his body was fragile- which meant that there was a very real risk of this transplant surgery going wrong. Nagendra was then advised to take an IVIG injection, which he’s been taking every month for the last 15 years of his life. When he first started taking the injection it costed about Rs 5,000 per shot, but as Nagendra grew older, the dosage had to be increased, and the cost of the injection increased to Rs 10,000 per shot.
A lifetime of suffering
“The injections grew to be a part of his life. As he neared his middle school phase, we were looking into getting him a bone marrow transplant. However, it was proving impossible to find a donor due to the sheer complications that he acquired due to his medical condition. Additionally, we were told that the bone marrow transplant can cost anywhere between Rs 20 lakh to Rs 30 lakh”.
Taking into account the staggering cost of his bone marrow transplant, the family decided to start saving up so that he could get his bone marrow transplant sometime in the near future. Nagendra’s dad owns a spare parts shop, so saving up meant a long term commitment and they were ready to go all the way for their son. However, fate had different plans in store for them.
“A few days back, he came home complaining of fatigue. When I went to check on him, he was burning up and I immediately observed that his cheeks were abnormally swollen. I panicked and rushed him to Manipal Hospital. We were told that due to his white blood cells facing continuous and widespread change, his condition had worsened rapidly, thereby pushing him into becoming a cancer patient. He was now suffering 4th stage lymphoma cancer”.
Nagendra needs chemotherapy sessions costing Rs 25 lakh in order to be able to fight back and overcome lymphoma cancer. However, right now, his bone marrow transplant can only be done after he overcomes his cancer first, through chemotherapy. He is being kept under medical observation while his family is struggling to make ends meet.
How you can help
The current battle is to ensure that Nagendra is completely free from lymphoma cancer. Until he recovers from the cancer treatment and gains strength, the bone marrow transplant will have to wait. As he lays in hospital under medical observation after his first cycle of chemo, his family is struggling to make ends meet. His chemotherapy sessions and post op care totals up to a staggering Rs 25 lakh. The only way to help Nagendra is to help his family afford the treatment expenses that are to come.
Your contribution towards his treatment can help save his life. Further, you can help by sharing Nagendra’s story on Facebook and Whatsapp.