Grace, courage, bravery. These words sum up Rama Rani, a 25 year old Muscular Dystrophy (LGMD) warrior. Perhaps shaped from years of facing obstacles, when one speaks with her it is her unbreakable spirit that shines through.
Her journey has been difficult- she was first diagnosed with cancer as a child. This led to a leg operation even before getting diagnosed and because of it her leg got twisted. She initially attributed her frequent falls to this. Eventually, at 11 years old, her father took her to Chandigarh for a few tests, it was determined that she has Muscular Dystrophy LGMD. So far, she’s had five operations to deal with these.
More than the physical issues, there has been a deep emotional toll. At first it was the uncertainty- not knowing what the diagnosis was or what was even happening. Then the questions- “why me?” “what do I do now”. Nobody else in the family had any history with the condition. Initially, the family was supportive. Hopeful for a cure, they struck together. However as time passed, this hope faded away and so did the support. Today, Rama Rani says she lacks this support system the most. Since her childhood, the road has been hard and bitter, and this was one of the hardest blows.
She says despite all this, she pushes herself forward.Her secret is in staying positive. She doesn’t see herself as weak. “I always think I’m strong. I always think I’m alright. Other than this I’ve got a lot of problems since my childhood. I never lost to them. I have to be strong because you never know about time. Anything might happen at any time- whatever happens happens for the good”, says Ramarani. It’s one life and we make our own happiness- despite the hardships, despite the worries, the pain. “So you see if you want to live happily or live crying about it. Time just runs away and it never comes back,” she says. “Happiness isn’t guaranteed for anyone, no matter what background they come from.”
When asked what advice she would give others, she said one thing- never lose hope. No matter what happens, whether people support you or not, never lose strength. She kept looking for good doctors, and eventually found Mr. Vasanth Rao (link to trustees page). She calls him her God, thankful for all the help he provided through the Trust. Thanks to this kind of support, she says her tiredness has faded away. With renewed vigour, she is seeking treatment today.
In the past, she has tried treatments such as Physiotherapy and Panchakarma under Baba Ramdev. She had also taken prescribed vitamins and tablets from neurologists. She had no government support for any of this- beyond getting tested and treated at government facilities. She doesn’t attribute this as a failing of the government though.
Looking forward, she says she wants to take care of her body and keep fighting- stronger than ever. She says that today, she is in a better mental space. After coming out of the jaws of death before, she is unbreakable. She also wants to give back- “Mr Vasanth Rao has also filled me with a lot of confidence and I just want to give back something to this trust. This foundation has really helped me out and I hope this reaches a lot of people like me. A person only understands something when they have experienced themselves, because of which this trust is doing so much to help everyone out. So I’m thankful for that “, she elaborated. Having received so much support from the Trust, she hopes to pay it forward by telling her story and inspiring others to stay positive.