25th September each year is celebrated as International Ataxia Awareness Day. Ataxia. I hadn't heard of the word until three years ago. When a chance meeting brought me face to face with Rao uncle I wrote a post about it.
The next year we decided to get together to do something to bring an element of hope into the lives of the two young men who were struggling to even stay afloat - struggling to smile, to desire, to live.
We thought we would take baby steps to spread awareness about Ataxia. We started a blog and it is maintained exclusively by Guru Prasad and Vivek Rao, sons of Rao uncle. Towards the same goal, last year we celebrated the Ataxia Awareness Day hoping to bring the Ataxians across Pune together.
It hasn't been easy. Needless to say, apart from the physical and mental trauma these patients go through there is also the social stigma attached to a disease no one can fully understand.
However, not one to give up, this year Rao uncle registered a NGO called Ataxia Awareness Charitable Trust (AACT) to formalise the aspirations of all Ataxians - to be able to live lives of dignity, to be able to earn a livelihood, to have a chance at 'happiness' and to build an Ashram where they can live without burdening their ageing parents or other care givers.
We celebrated this day at their residence, and I thought what better way to spread a little extra cheer than to make a Pookalam as part of the third Joy of Giving card. Rukmini auntie was happy. Rao uncle elated. The pookalam served its purpose well.
Again - from design to concept to implementation, the credit goes to Oorja and Abhir!
|Abhir has to disturb his sister|
|Guru and Vivek|
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