The World of Vineet: September 2018

Friday, September 14, 2018

#IFSBHCON2018

The 28th International Conference on Spina Bifida and Hydrocephalus #IFSBHCON2018
was organized by #InternationalFederationforSpinaBifidaandHydrocephalus #IFSBH in collaboration with the local body, Spina Bifida Foundation India #SBF.
It was held for the first time in Asia in New Delhi, India, from 10th August to 12th August 2018. It was a resounding success and Vineet and us were privileged to be a part of this important Conference.
There were representatives from Belgium, Switzerland, US, Canada, Norway, Uganda, Ethiopia, Zambia, South Africa, Sri Lanka, Taiwan, Malaysia, Spain, Tazikistan, Vietnam among others(25 in all I'm told) and of course from various states of India.(Sorry if there is something wrong in the list, but this is what I've gathered) 😬 The venue Le Meridian in New Delhi was as impressive as the participants. Parents of children with SB, adults with SB and high profile Doctors and Surgeons held parallel as well as plenary sessions relating to the numerous topics that Spina bifida brings with itself.

10th August 2018, Friday
When we checked into #LeMeridian #NewDelhi at Connaught Place around noon, we were captivated by the beauty of the place. Lunch was being served and after lunch,we proceeded to the Conference Room just beside it. Here I would like to mention that the Conference Rooms in Le Meridian, New Delhi were in the basement at minus one floor and to reach that, you had to use the Service Elevator for wheelchairs. It wasn't much of a problem except that during those 3 days , we sometimes encountered the pantry car or the laundry car.
So, going back to my post,
A session was going on which was in collaboration with WHO and Neural Tube Birth Defects and the President of the International Federation for Spina Bifida and Hydrocephalus, Dr Margo Whiteford had already started the introductions. I saw some familiar faces (from Facebook and Whatsapp)and we met for the first time in person. It was like as though we had known each other since long. We introduced each other to others as well and settled down for the sessions which carried on till evening. I won't go into the details of the sessions here as the post will become very long. However, for those who might be interested, HERE 's the link to the programme brochure as put up on the Facebook Page of the IFSBH.
In the evening we had the very 1st National Committee Meeting of the Spina Bifida Foundation of India and as many as 13 State Chapters of the Foundation were formed to reach out to all states of India in creating awareness and preventing spina bifida which is still unknown about in our country. And if I might brag a bit, I've been nominated to convene the state chapter of West Bengal. A new begining... I'll try my best!

Here's the link to a few pictures I posted on Facebook (which is why the quality is not so good) - https://photos.app.goo.gl/tj5EDSBzy8uaSRej7

11th August 2018, Saturday

The next day our sessions were scheduled to start at 8 in the morning, but everyone had had a tiring day before, due to travels and such. So we finally started a bit late and I was eagerly waiting forward to hear from a host of very impressive speakers and #IraSinghal was one of them. I sat through each of the sessions coz I was very interested in each of them and the topics were as varied as the speakers. I was even asked to monitor one of the sessions and I gladly obliged to my utmost pleasure.

Towards the evening arrived #RaveenaTandon , a famous Bollywood star, and also the brand ambassador for #spinabifidafoundation . She is very supportive of all the events that the Foundation hosts and has a very golden heart. She even obliged all the kids with a group foto.

After she had left , we had a group foto and look how diverse we are. I feel empowered to be a part of this big and beautiful family.

That evening we had the Conference Dinner and I had taken permission from our Founder Dr Santosh Karmarkar, for Vineet to play the Octapad for the guests. And boy did he play! Vineet had accompanied us to the Conference only because we told him he would be playing for the guests. He played and enthralled everyone and they all became his fans! That evening , everyone came to know about Vineet the musician and I couldn't be more proud! 😊 Here's the video -

And here's another video to show you all how much we enjoyed that night with the DJ and danced away our blues and worries..😃😍
https://www.facebook.com/jacqueline.r.victor/videos/10217441007921877/?l=9166364116643071576

I for my part had gotten very very emotional that night..but that another story..

12th August 2018, Sunday

Today was going to be the last day of our wonderful Conference and it was a bit heartbreaking, coz we were just getting to know each other and so were the kids. Today there was a tribute to Mr #JavedAbidi , the pioneer of Disability rights and advocacy in India and he had Spina Bifida. May his beautiful soul rest in peace 🙏. Also there were 2 videos of a child and an adult with Spina bifida in India. Then at the very end I gave my speech for which a topic had been given to me beforehand - "What I want to tell my Doctor - A Parent's perspective"

Here it is - https://www.facebook.com/jacqueline.r.victor/videos/10217373013222052/?l=4828727102902456145

It was finally time to thank and say goodbye to each other and even then, we couldn't finish. So much to say and share and so less time! Here's hoping that the next National Conference will be longer and we will spend some more quality time with our new family in India.😊

So Thankyou once again for joining Vineet's journey here, looking forward to more happy times with my boy!

(And please do let me know in the comments if I've made any mistakes or do write to let me know what are your thoughts, I would love to go through them!)

OPEN LETTERS TO HRITHIK ROSHAN

02.07.2004

Dear Hrithik,

I am sure you won’t forget this letter in a hurry. My son was watching your latest movie –“Lakshya” and as you were punished during your training session for not paying attention ,there were sounds of sobbing in the theatre. My husband and I turned towards our son sitting between us and realized that he was sobbing uncontrollably with tears running down his cheeks. When asked ,he replied –‘ My Hrithik is punished –so I’m crying.” It took quite some time for us to make him understand that you did not cry and bravely completed your punishment.

That’s my son ‘Valentine Vineit Victor ",aged four years for you .He`s been your admirer even since he could hear and understand songs and I mean songs from ‘Kaho Na Pyar Hai’.He used to say ‘I do-do’ for ‘I love you’ in the title song when he was about 1 year old . Then came ‘Koi Mil Gaya’ and that was the first movie he watched in a cinema hall. And he was so so excited . He watched the entire movie though he was very drowsy due to his habit of sleeping in the afternoons .

Now you may ask – whats so new about a small boy being your ardent admirer? Here’s your answer – Vineet has ‘Spina Bifida’ and is paralyzed from waist downwards . It’s a neurological disorder by birth and we are extremely thankful to God that he is a very intelligent boy . He is in Nursery -II and stood First in Nursery -I .He is very well- behaved and is very very interested in music and singing . And not to mention, he can copy all the dance steps that he sees on TV. – that is, as much as his upper self allows .

He has an identical jacket like yours in the song ‘Kyun Chalti Hai Pawan’;and every time he puts it on , he puts up both his hands in the air just like you and starts singing . He’s just crazy about everything you do and says he’ll look like you when he will grows up . We make him do things just in your name ! ( eating , studying etc. ) We even got his head shaved saying he’ll look like you !! HA HA HA! ( joking ).

We saw you on the National Geographic channel some time back with orphan children . We got a glimpse of your personal life . And here’s what is really in my mind as I write this letter to you –Can Vineet meet you in person sometime – may be during some holidays – as my husband is a teacher . Actually ,though we treat Vineet normally , deep down in our hearts ,we are so attached to him that we now see through his eyes , and hear through his ears and wish for whatever he wishes . And I can already imagine his expression if he gets to see you in personal – a very big , no, huge achievement in his life . It just means that we would like to spend a few precious moments in your company ;but we have absolutely no knowledge of how to get to you.I am sending this letter with all my hopes pinned on you and even though I don’t want this to look like a fan-mail, I have to congratulate you for your superb performance in ‘Koi mil gaya’.I could identify myself with your character’s mother- the mother of a child with special needs. Its really hard to protect your baby from a few uncompassionate people. Anyways ,that’s a completely different topic.

Vineet is on a wheelchair and after a few more months, it will be impossible to carry him around as we have been doing uptill now .My husband has already floated Vineet’s site on the web, which you are welcome to visit at –www.theworldofvineit.com and www.geocities.com/vineitsjourney

Our mail add.is- Mr.Ravi Victor, Vijaydeep ,P.O. Upper Chelidanga, Asansol-713304.

And e-mail id is rav_victor@yahoo.com

Please do give us some personal response from your side. We are eagerly waiting for your affirmative reply.

Mrs. J.Renu Victor

&

Mr. Ravi Victor

(P.S. we could not get your e-mail i.d.,so we are posting this letter-sorry for the delay)

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10.04.2006

Dear Hrithik,

The above is a copy of the letter I sent u in November 2005. I suppose the letter either got lost or maybe u were busy getting ready for your “little bundle of joy”. OUR HEARTIEST CONGRATULATIONS ON YOUR NEW ARRIVAL!!!!

Actually, we sent u a courier in October but it was returned unsigned. How very foolish of us! Then we sent the letter by ordinary mail. It never came back nor did a reply. So as we write this letter we don’t know how we’ll send it ,but wish it will reach u-we are hoping in the good Lord. The latest is that Vineet has been promoted to Class 1,and he was very seriously ill in June last year. So his health has gone down a bit as u will c in his sites’ updates. Do please let us meet u some time this year later maybe in the winter hols.? Vineet will be very happy. Its in his mind that he’ll be seeing u sometime in his life.Please grant his wish,sir.we’ll bless u for this everafter. In our last letter we sent u Vineet’s snap, but we r scared this time . Do visit Vineet’s site. I am not writing a long letter this time. I’ll write to u after getting your much awaited reply.

Thankyou in advance,

Mrs. J.Renu Victor &

Mr.Ravi Victor

24th May 2010

Dear Hrithik,

I am the mother of a 10 year old boy who has ‘Spina bifida’. I am writing this letter today,i.e. 24th May 2010 in the hope that maybe we can get to see you and meet you here I Kolkata. I don’t know whether this will happen or not as I write this letter now at 5.30 a.m. But what I would like to tell you, is that my son ‘VINEET’ is your ardent fan ever since he was a year old and ‘Kaho na pyaar hai’ was just released.

I had sent you some letters some years back, the copies of which I am attaching. PLEASE do read them when you have time. I understand that’s its difficult to listen to just a fan, but my heart says you will surely grant my request( on behalf of my son).

Vineet now has a blog which I hope you will have time to visit- theworldofvineetvictor.blogspot.com

Thankyou so much,

Mrs. Jacqueline Renu Victor

jrenuvictor@gmail.com

(I don't swear, but u can rest assured that if you ever contact me, it shall be kept private, I promise..)