Hyderabad: The story of Venu Gopal began 20 years ago when he was diagnosed with muscular dystrophy. Muscle dystrophy is a genetic disease, which results in progressive weakness and loss of muscle mass.
After a prolonged battle against the disease for many years, Gopal has submitted his application for mercy killing. Just like him, many others in the state are struggling to win the fight against this incurable disease.
One day, the slippers on Gopal’s feet kept falling off despite his efforts to hold on with his toes. Confused and scared, he approached doctors, who told him that things were about to get worse.
Everyday would soon become a hurdle, small day to day activities would become tedious and difficult to accomplish. When the muscles all over his body began to slowly weaken, reaching for a glass of water too became a herculean task. Despite, the odds Gopal decided to live life as best as he could with the help of family and friends.
Gopal involved himself in his education, trying his best to learn and grow. In time, he was able to begin his Masters in Computer Science. However, he had to drop out as he was not able to support himself. Sadly, Gopal’s family all moved away and some of them passed away, leaving him alone to fend for himself. He was often left all alone at home, with no one to neither help nor answer his cry for help. He says if he falls from the bed or falls while trying to move around, it takes months for him to recover.
There is a constant fear of hurting himself that comes with the loneliness of having to go through life disabled and helpless. Gopal eventually reached out to Telangana’s Muscle Dystrophy Organisation and began to contact researchers in CCMB who were interested in his condition.
He says he is more than willing to go through any tests and to even participate in any clinical trials. He says there was a stage when he was able to participate in treatments that helped him very much. Gopal saw instant improvements in small things like being able to open the lock on his phone without breaking out into panic. However, the cost of Rs 2 lakh was too expensive for him to bear on his own and he was forced to let go of the one thing that made him hopeful.
Gopal, has now reached a point in his life where he has accepted defeat from the disease but still wants to be able to help others in future.
He believes in the power of research and wants to be able to contribute to studies by sharing his condition and going through any tests to enable studies.
Gopal has but one plea, “I wish for more support for my fellow friends who suffer from this condition which is not only physically torturous but also mentally draining. For some of us that do not have a family, even if we could have caregivers to help us every day it would be a blessing. I know my story will be read and soon forgotten but I appeal that people should reach out to us and motivate us and help us with costly medical bills.”
Gopal says if he finds help, he will withdraw his mercy killing petition and spend his life in the pursuit of research.
