Waiting for cure, with a mountain of hope and bright smiles
I am a teacher by profession but I think life is the greatest teacher a person can have! Says Rupali Patil, a 33-year-old tutor from Dhule, Maharashtra. Together, Rupali and her younger brother Amol teach engineering subject to more than 50 students. A look at their class and you will learn what discipline and hard work are.
Rupali was born into a middle-class family, a very happy one indeed. Her father was a government employee and mother looked after the family. Their household was full of glee with four children spreading color and joy. However, sorrows stuck them when Rupali’s elder brother (2nd child) was diagnosed with ataxia. One after the other, the disease stuck 3 children in the family.
Remembering the unfortunate day, Rupali says how horrific it was. Except our elder sister, all the three of us have the disease. We were very young at the time of my elder brother’s diagnosis. There was no medical advancement as such and most of the neuro-specialists were clueless about it.
From medical institutions to religious places, we sought everything with hopes that there would be some cure but we are yet to find a solution.
Talking about the ordeal of her brother, Rupali shares that he had the toughest time dealing with, because he had no clue of what was happening. We are extremely lucky as compared to him. We have a computer and internet facilities to pass time, meet friends, and learn something new. It is through the internet that we try to research about the condition and try to stay updated with the advancements in the field. My elder brother Prashant Patil passed away at the age of 41. Apart from the disease, he also suffered from the lack of knowledge and loneliness. It was in 1982 that my elder brother started experiencing the symptoms. He was just 10 year old at the time. There was a visible difference in his walk but nobody in the family was aware of the reason behind it, so it wasn’t taken seriously. When he experienced problem in his eyes, a doctor also conducted a surgery to his eyes and that went vain. His problem then became a mysterious case that doctors wanted to experiment on. It was after 13 years that the mystery unfolded and experts in Mumbai declared it as Ataxia (1995). The problem progressed a lot by then and he was on a wheelchair. Few years down the line and he passed away.
It was during the same time when I experienced problems at school. I found it really difficult to close my eyes and stand at the school assembly. My balance would drift when I closed my eyes, it was difficult for me to walk straight. There were several instances, be it the sports period or during a school picnic, I felt that something was wrong and shared the same with my family. Considering the bad experience that we had at the time of my brother’s diagnosis, my parents weren’t ready to go see a doctor again. There were times when I felt bad because of the problem but hope and will for a better life kept me going.
In the year 2005, my younger brother too was diagnosed with the evil disease. We went to several experts and also underwent stem cell therapy in 2012. The doctors conducting the therapy said that it would stop progress of the disease but it turned out to be untrue. We are now restricted to a wheelchair. It been a year since my father passed away and my mother, who is over 65, finds it difficult to do all our chores. Thanks to my sister, who supports us! But how far can it go? Our future still lies in oblivion and we are continually looking for help.
The main problem with our condition is the lack of awareness. It is 2017, the time when our country is sending satellites to the moon but what about medical advancements? There are problems like cancer and heart attacks that people are fully aware of, and then there are conditions like Ataxia, which aren’t known. Even we wouldn’t have known about it but now, after spending all our prime years with it, we are compelled to know about it. The funny thing is that the doctors are unaware of the cause and there is no research going on it the front.
We are still waiting, with a mountain of hope and a bright smile.