Archive | September, 2015

1st India Progeria meet up at Kidzania

30 Sep

It was a day filled with awesomeness, as it was the first time that the Progeria meet-up was organized in Mumbai. Prachi Sah from Bihar alongwith her parents was travelling to Boston, USA via Mumbai, for her treatment, which was organized by the Progeria Research Foundation.IMG_8137

Nihal Bitla with his parents and siblings too joined in. Since he had earlier been to Boston and feeling better with the treatment, he had a lot to share with others.

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Aditya Sahu, aged 6 years from Chattisgarh, was enjoying his first trip to Mumbai with his sister & parents. All of them had gathered for a common cause to help create awareness and fight against Progeria. It was for the first time for little Prachi & Aditya to see kids like them.

IMG_8105Prachi, 5 year old Progeria kids from Patna

Living in a world where they are looked upon differently and ridiculed at times, it can difficult at times. But just the feeling that there are others like them, is such a relief and a comfort for them. So when they bumped into each other at the hotel, where they were staying together, it was amazing to see how they hit instantly. While on the way to our office at MediaMedic, they started playing and teasing each other too.

It was good to have both Prachi & Aditya meet the team at MediaMedic which is a part of the GlobalHealthPR network, who has been actively involved with the Progeria Research Foundation’s work in India.

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They and the parents too were excited to be at our office and meet the team who sported the special Tee sporting the campaign #Finding60inIndia.

Then it was time to visit KidZania, where rightly the face of our campaign Nihal Bitla aged 14, was sitting at the chairman’s place in the boardroom. The parents had the opportunity to know each other & discuss issues about managing kids. The mothers came together crossing the regional barrier of language & culture, they spoke about how they manage the symptoms of Progeria . There was a lot to share and the empathy for each other was really touching.

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They discussed about the emotional management and the thought about ‘why my kid’. But there was so much to learn from the Bitla family who was managing Nihal for over 14 years now and that experience helped and was inspiring enough for them to look at life positively. That’s when they noticed the kids, who were far away from these thoughts, busy painting & occupied in their own world.

Nihal’s Ganesha was awesome and so were the other two drawings.

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Prachi & Aditya were enjoying coloring on paper for fun and less for art.

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And then it was time for the kids to have all the fun when they entered the KidZania zone. The whole team at KidZania had worked out a brilliant plan to pamper the kids. First they put on the pilot’s dress and did a flying simulation. Aditya the naughty one was not ready to land even when his flight was touching ground.

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A quick drill at the firestation and the firefighter kids were running around balancing their helmets and marched on to their trucks. The whole KidZania team was dancing as the truck moved to the fire spot.

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As real pros they enjoyed pumping the water through the hose and put the fire out with a thundering applause from the people present.

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Then the kids were off to a toy car ride filling Petrol at the Gas station. The photographers were busy chasing this kids to get the best shot.

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Then it was time for a Bollywood dance premiere. So while the kids were practicing their steps, the media was shown the recent documentary ‘Illuminating Progeria’ produced by MediaMedic for Progeria awareness. Once on stage, Nihal lit-up the dance floor on some thumping Bollywood number with the audience cheering his each move.

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Though this was the overall plan, the kids energy levels were so high, that they wanted to play the role of the dentist. And they did work like a pro! Bravo – they were up there using the gadgets on the dummy patient and I wondered whether they were going to rip the tooth off the dummy 🙂

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And that was it – a day filled with life-long bonding of families, exchange of promises to stay in touch, requesting each other to contact if any help needed. It was difficult for the families to say Good Bye to someone whom they didn’t even know a few hours back.

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The connection of ‘Progeria’ connected them so strongly that this bonding made them unite as one, inspite of different regions of this vast nation and overcame the barriers of language, culture, practices & attitudes. This reminded me of the meet-up that I attended in Washington DC in May 2013 alongwith the Spectrum Science team, organised by the Progeria Research Foundation, wherein kids and their families from various nations got together and stood united for a cause.

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Once the day was over, Aditya who is crazy about Ganesha decided to visit the Riddhi Siddhi Mandal at Andheri being the Ganesh Festival in Mumbai.

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Then it was also time to drop Prachi & her parents at the international airport as they were off on the flight to Boston for treatment with the Progeria Research Foundation.

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We have a long way to go as long as identifying 60 kids in India is concerned – but nevertheless it’s a beginning for #finding60inIndia.

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In case you know any child with Progeria around you, kindly get in touch at info@progeriaresearch.org