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Sturge Weber Syndrome – N Vinayak Venkateshwar

How Chandra solved the mystery of his missing baby brother!

[ Narrated by the parents Geetha and ‘Nary’ Narayanaswamy]

We visited the US East Coast about five years ago. We were four of us – the parents, Vinayak, and his elder brother Chandrasekhar. Vinayak has a condition called Sturge- Weber Syndrome, a rare disease.

It was July the 4th. We were in Washington DC particularly to see the Independence Day fireworks.

We were at breakfast when Vinayak just disappeared. One moment he was there in the restaurant buffet area. And nowhere to be found in the next. His mobile was with us. He did not have his ID tags on him either.

Geetha rushed out to ask the doorman if he had seen Vinny step out. He told us that he was absolutely sure Vinny had not gone out. Nary meanwhile checked with the reception to say Vinny is somewhere at large in the hotel.

And found out they did NOT have cameras in the lifts. But they did have them in the corridors, a few dozen of them actually!

We desperately requested for a quick check of the seventh floor – where our room was. It showed Vinny was not there. So we knew he had not gone back to the room.

The hotel had some ten or twelve floors and maybe four elevators. Where to look? Utter Panic! Our minds were stumped into immobility.

And amidst this Chandra also now disappeared! We were now left benumbed, wringing our hands and wondering what to do next.

It seemed like a long time, and suddenly there appeared Chandra! With Vinayak in tow following him lamb-like. It had been actually just a couple of minutes, maybe four minutes tops.

“Where did you go Vinny? How did you find him Chandra”?

” I know Vinny has difficulty telling between 1 and 7 mama! ” said Chandra. “So when I knew he had not gone back to our room in the seventh floor, nor gone outside- I decided to check the first floor”.

In fact Vinayak was standing at the exact same room that was directly six floor below us. ( He has a remarkable visual – spatial faculty, a result of his dominant right hemisphere ).

And was seemingly rather bewildered that it didn’t look quite the same….. when Chandra found him.

As they say in the US, Bingo!

Big lesson learnt. Vinny now has a metal ID Tag with our phone numbers . We absolutely ensure that it’s on his wrist whenever we step out!

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Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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