How a personal tragedy led to the finding a larger purpose - My Take by Dr Ketna Mehta, founder, Nina Foundation

For 18 years, Nina Foundation has been serving to support and empower friends with spinal cord injuries in multiple ways. The spark was a lit by a desire to honour the spirit of her late sister, says founder Dr Ketna Mehta in My Take where she shares her experiences working in this field.

Nina was my sister. On 25 June 2000, she woke up one morning and just collapsed. She was only 39 years old when she passed away and it was in her memory, that my younger brother, Dhaval, and I started Nina Foundation.

To give you a little background, I suffered a spinal cord injury when I was 32 years old while paragliding. It was a turning point for me and my family. At that dark point, family, Nina was a huge source of inspiration. She motivated me to chase my dreams and to pursue my talents despite my injury. It was this positivity that Dhaval and I wanted to pass on to others with spinal cord injuries.

Many challenges

There were many challenges and obstacles when we set out. However, as a management professional, my attitude was to regard any problem as exciting, because it also brings along with it the possibility of a solution. And that too coming up with a solution in a country where nothing exists.

So, imagine at that time 18 years ago, there was no comprehensive spinal cord injury rehabilitation centre in Mumbai, and still does not exist. There was no awareness about the critical period called the Golden Hour after an accident that can minimize the extent of a spinal cord injury. Be it facilities like a low cost scoop stretcher or understanding, the gap is huge. This gap is something I realized during my PhD which I did on healthcare rehabilitation management in 2008.

We realized that we have to teach everyone to MANAGE. That is the defining differentiator we brought in - the management aspect that sets the foundation apart. We in India best know how to survive despite numerous constraints .

Building networks

Apart from counselling and motivating new patients, I connected with conferences on spinal cord injuries and networked with doctors in India and abroad. We set up the first helpline for spinal cord injury and soon people from remote parts of India started connecting with us. I spent hours researching various therapies and treatments across the world to find out how best we could guide. This knowledge, research and ability to interact with people in developed countries became a benchmark for understanding how we in India could get on with our lives.

The biggest edge of Nine Foundation is that we have a great team of doctors as our board of trustees and experts. We have looked at creating awareness and building motivation in a different, offbeat manner. We have brought in the innovation angle to management. We have done seminars on active rehabilitation an aspect no one in western India was aware about.

We wanted more professionals to become aware of active rehab and what their role could be and invited physiotherapists and occupational therapists students and heads to attend - all for Free.

Nina Foundation also instituted the Spinal Cord Injury Awareness Day on 25 June. This is Nina’s death anniversary and we wanted to make that day one of hope, awareness and solidarity, into a day of ‘life goes on’, a day of ‘live for the moment’. We started this in 2009 and we made it a huge occasion with a wheelchair dance, That was the first time the world got to see that people in wheelchairs could dance! The dance moves were taught to the team by Shiamak Davar’s Victory Arts Foundation team.

Empowerment is key

A lot of our focus is on instilling a sense of confidence and independence in people with spinal cord injuries and we do this through work-related therapies, employment and education seminars as well as donations of assistive devices and appliances.

We also set up the Rockstar Award which is for an ordinary person whose life has become extraordinary due to a spinal cord injury. Then there is the Will Star Award for a young person with a spinal cord injury, who is working towards creating a space for himself or herself. There are talent parades held as well. We keep giving opportunities to our friends to showcase their various talents, which they have never done before with superlative coaching and grooming.

We have had sessions in peer counselling and mentoring as well. There is so much one needs to know post an injury to lead a good quality of life. Spinal cord injuries are caused due to accidents and falls, including tumour and TB of spine. It is a permanent and most devastating disability declared by the World Health Organization.

Our publication One World is the only one in India that focuses on spinal cord injuries since 2000. Imagine how motivating it is for a young person who is totally down and out when he or she sees their photo and an article on them. It makes them feel they are WORTH it and is a huge morale booster. We also feature stories about legal rights , medical facts, innovations and research.

Going ahead, our vision is to set up a world class centre for spinal cord injury in Mumbai. That is the mission we started off with. We will also continue with our relentless pursuit to touch people’s lives through our many personal interactions. To keep the spirit of Nina Foundation as an institute without walls, intact.

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