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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

Dream Day with Nihal

17 Feb

It was a warm Friday afternoon when Mumbai was getting ready for the Valentine’s eve. One kid who started from home was told by his dad that it was another routine Doctor visit. He was 14-year-old Nihal Bitla – suffering from Progeria. But he didn’t know what lay ahead of him in the evening. Me & his father had planned a surprise visit for him to Lamborghini Mumbai’s showroom. As he reached & stepped out on the road, he realized that this was something unusual. He saw the Lamborghini Bull in the logo outside & looking at him it instantly struck Nihal that this was going to be a special evening. IMG_1838

When I went out to greet him, he said with a twinkle in his eyes “Dinesh Uncle, I knew that you were involved in this.” I asked him “Where is the Doctor here?” and he pointed to the Lamborghini logo. Just then Gautam Madnani from Lamborghini Mumbai came in to welcome him. Gautam had helped us organize everything so well.

This story started earlier in December 2014, when I had spent a day chatting with Nihal at his Bhiwandi residence and knew that Lamborghini was the thing that moved him. IMG_5904He was so passionate about Lamborghini that he could tell me the different models and their specialities like a Pro. He is a keen net surfer and thanks to Srinivas – his father, he had been gifted with a Mac Book to learn. So though Nihal had to opt out of school, his learning is excellent. His dominance on the subject of Lamborghini baffled me. So when I spoke to Srinivas, he said he had tried earlier for a test drive with Lamborghini but could not get through to anyone. During Nihal’s visit to the USA for his treatment, we wrote to Lamborghini there, but at that point they couldn’t help us.wp_ss_20141209_0001

After Nihal’s return, when I shared this back with MediaMedic team and my family. My wife – Ketaki’s friend – Komal Machindar – happen to know someone who happened to know someone and that’s how we got in touch with Gautam Madnani at Lamborghini Mumbai . Gautam was kind enough to help and went out of his way to make special arrangements.

We had earlier planned the surprise on Nihal’s 14th Birthday on 20th Jan, which apparently happened to be his father’s birthday too. But since Nihal was unwell it got postponed. But on 13th Feb, the plan was no different. My team at MediaMedic had worked on a lovely card 10408687_10152741385648087_7896095462467966616_nwhich we handed over to Nihal and he was excited to see his pictures there. The team was present to co-ordinate and wish him.IMG_1695 A few select media friends were invited too as we wanted to spread the awareness of Progeria.

It is really thanks to the Progeria Research Foundation, whom I had the good fortune to meet their whole team when I was in the USA for some work. Nihal had visited them in December 201410882241_10152614487583087_3287826950105762714_n and was enrolled as a part of the new clinical trial drug. Srinivas was telling me that in under a month now with the new drug his appetite seemed to have improved and his weight gain is also much better. He also mentioned how overall he seemed to have more body mass and his knee flexion had also improved.

As a part of the GlobalHealthPR group, we have been actively supporting the Progeria Research Foundation since 2009 in actively searching for Progeria kids across the globe as a part of the ‘Find the Other 150’ campaign. Nihal was very happy visiting Boston and seeing kids like him and interacting with them. 1549327_1008028179229634_2170806707860788628_nHis father said that for the first time he seemed to understand the disease well and has turned very positive since then.

So here he was sitting inside the white Huracan model and admiring the interiors.WP_20150213_15_42_04_Pro

When Gautam started the ignition, he loved the firing of the car and was pretty mesmerized with it.

And finally for the big moment, when Gautam himself took out the red car on the road, a crowd gathered to watch. Nihal sat proudly with his dad next to the driver’s seat, ready for his dream ride which he had waited for years. WP_20150213_16_45_53_ProSo the next 30 minutes he was speeding down the Mumbai roads passing the Worli Sea Face, feeling the power of the Lamborghini.

And then back at the showroom, it was party time with his small bunch of family & friends we had a cake cutting. IMG_8032And guess what Lamborghini gifted Nihal – his favourite Orange Avantador model – and was he thrilled? He was on top of the world at that moment. And for his personal collection, he posed with the Showroom cars giving the photographer some of the best shots.IMG_1848

And then it was time to head home. Nihal called me close and said, “Dinesh Uncle, you know what? I had already visualized this day many years back”. I didn’t have any words to say on this, as this came straight out of Norman Vincent Peale’s book – “The Power of Positive thinking” IMG_1733

Mumbai Mirror carried the article the next day. This day was one that gave me immense satisfaction internally to me and reminded me of the day I spent interacting with Progeria kids at the program organized by the Progeria Research Foundation in Washington DC. 44375_638141606202671_742371028_nGuys salute to the good work that you guys do and the dedication to the cause that you have! Finally the icing on the cake was when on the next day I got this message from Nihal:

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Cheers