Features Friday, May 01, 2015 - 05:30
Manoj Kumar Sikdar thought that seeing death on the battlefield had taught him the meaning of life. But years later, watching his little son battle an incurable disease, he feels that there is so much more to life than he had thought. Seven year old Mihir, who is terminally ill, lies in a hospital in Hyderabad, greeting everyone who walks in with a big smile on his face, even though he can’t talk anymore. For the past ten months, doctors, nurses and medical staff have all been tending to this brave child and hoping for a miracle that will save him from a rare genetic disorder called Neurofibromatosis (Type 1) which causes chronic pain and growth of tumors along nerves in the skin, brain, and other parts of the body. The disease affects one in 50,000 people and is often accompanied by many complications which requires the person to be continuously monitored. A Kargil war veteran, Manoj has done everything he could since Mihir’s condition was discovered. “For the last ten months, I have seen my son fight against this disease and I wonder how he manages to smile even though he goes through so much pain," he says.  Mihir is currently on ventilator support, paralyzed on one side and is also battling additional health complications like constricted blood vessels in brain, a spine disorder, bleeding in the brain and a urinary tract infection. He has also lost his voice after a tracheotomy tube was inserted into his trachea to make him breathe. He communicates with the help of his small drum and barely audible whispers. Having watched his vibrant son refuse to give in, has taught Manoj about other battles: “I have learnt so much from him. I saw a lot of death during my spell on the Line of Control and thought I understood the value of life but when I see my son radiating so much positive energy despite his suffering, I understand that there is so much more to life. His spirit to keep fighting inspires me." Mihir was shifted to the ICU on April 9, 2014 and many months later, the parents have hit a hurdle. Until April 6, the expenditure for Mihir was covered under the Ex-Servicemen Central Health Scheme (ECHS) but it has expired since after 120 days of health care. The hospital where Mihir was admitted was charging Rs 4,500 a day but has now been charging 8,500 a day since the insurance scheme was not renewed. "Mihir is my only child and the doctors are trying to do everything they can but they are limited by the current developments in science," Manoj adds. With the bills going up, Mihir's parents have started a Facebook page, asking people to come forward and help their son and have even put out a video documenting his everyday struggle. Manoj does not want to lose hope and adds that he wants to do something to help others in his position. “I want to contribute to society and at least create awareness about the disease and help people out,” he says. Update - Read: There is always hope: Help pours in for Kargil veteran after appeal to help son