Last night was absolutely amazing. I was so nervous about the event. Would it happen? Would be people show up? Would it be successful?
It blew all my expectations out of the water. It happened. Over 400 people showed up. It was an incredibly successful night.
I was incredibly emotional this weekend as I finally got a chance to meet Stephanie St. Pierre, the founder of c22c, who flew in from Canada for the fundraiser as well as Murney Rinholm and her 15 year old son Atle who flew in from North Carolina, the only other child besides Dylan I have met with Emanuel Syndrome. He was an amazing kid. He absolutely raised my expectations of what might be possible for Dylan in his lifetime. Adle walks. Watching him walk, nealy brought tears to my eyes. It was a truly beautiful sight for someone who had resigned himself to the expectation that his child would never walk. He may not walk like you or me, but he walks. Watching Adle and all he has accomplished inspired me to continue working my butt off with Dylan so that he too might someday also walk.
Meeting complete strangers who absolutely understood what you were going through was like meeting a long lost member of your family. There was just this instant connection . In a matter of a few hours, we became the best of friends.
None of them had ever been to New York before and it was my pleasure to act as their tourguide while they were in town. We took them to Rockefeller Center, Time Square, the World Trade Center, and Chelsea Market. Thanks to a wonderful friend , they got to be on the NBC Sunday Today Show.
After all the touring, Sunday evening was the big event. I have to continue to repeat what an amazing event it was. Thanks to all the wonderful people at NY1 who volunteered their time to make this thing happen. They went so far above and beyond the call of duty it is beyond belief.
I would name each of them, but I am so afraid that I will leave someone out, and I dare not do that, that I would like to just thank them all as a whole. You are an amazing wonderful group of people and I must say that I am quite jealosu that my wife gets to work with such amazing people. You all have a friend for life in Melissa and me. I would definitly have your backs in a bar fight. ;>
Though special thanks do have to go to Jessica Abo who ran the whole show (We will definitely be out there cheering for you when you run the marathon). My wife walked up to Jessica's parents at the beginning of the event and told them that they need to write a book on parenting if they could produce a child that was this good and generous to people that she had only recently met. I could not have said it better myself.
The party itself was amazing. The location of the Chelsea Art Museum was beautiful. The food was delicious. The drinks flowed freely. The band was amazing. People danced their butts off. We raised a bunch more money in the silent auction , thanks to the generosity of all the people who came.
The fact that 400 people would come for this event just boggles my mind. Most of them had never even heard of Emanuel Syndrome. Many of them were family, friends or co-workers of Melissa and I. Then there were the people who we had not spoken to in years who came. It was so wonderful to see them again at such an event. Then there were the complete strangers, who came because it was for a good cause.
In the future, whenever I have to deal with bad or uncaring people (and I am sure I will), I will not let it get me down, I will not become pessimistic from it. All I will have to do is think of all the people who worked on this event, came to the event, and gave for this event. It will let me know that there are some damn good people out there.
Unfortunately, there were a few people who we were hoping to see who did not come, but since it was such a wonderful evening, I can only look at it as being their loss.
I was incredibly emotional all weekend but I kept it together pretty well throughout the event. That is until I came up to speak and thank everyone who was there. As I started to thank everyone, my eyes just filled up with tears and my voice cracked. I barely got out the following sentence. "When you are told that you have a disabled child you feel so alone in this world. Watching everyone who came here tonight to support this event, I don't feel alone anymore."
To top of the evening, we met another family with a child with Emanuel Syndrome. We had no idea that they would come. They heard about the event and came and introduced themselves to us. They have a 12 year old boy with Emanuel Syndrome and they are from Long Island. I was stunned. After nearly 3 years of searching for another local family we had finally located them. Emanuel Syndrome might affect only 1 in 10 million kids, but there are 18 million people in the tri-state area. Based on the numbers, I knew they had to be out there somewhere. We will definitely be getting together with them in the near future.
To continue on how amazing and wonderful NY1 has been, they had a camera crew at the event and they have posted a story about it. You can see the video from the event at: http://www.ny1.com/Default.aspx?ArID=86766
Once again thank you to everyone who participated in this event. You have truly made a difference in the lives of people who are dealing with an incredibly difficult situation.
You will always have a friend in me...
It blew all my expectations out of the water. It happened. Over 400 people showed up. It was an incredibly successful night.
I was incredibly emotional this weekend as I finally got a chance to meet Stephanie St. Pierre, the founder of c22c, who flew in from Canada for the fundraiser as well as Murney Rinholm and her 15 year old son Atle who flew in from North Carolina, the only other child besides Dylan I have met with Emanuel Syndrome. He was an amazing kid. He absolutely raised my expectations of what might be possible for Dylan in his lifetime. Adle walks. Watching him walk, nealy brought tears to my eyes. It was a truly beautiful sight for someone who had resigned himself to the expectation that his child would never walk. He may not walk like you or me, but he walks. Watching Adle and all he has accomplished inspired me to continue working my butt off with Dylan so that he too might someday also walk.
Meeting complete strangers who absolutely understood what you were going through was like meeting a long lost member of your family. There was just this instant connection . In a matter of a few hours, we became the best of friends.
None of them had ever been to New York before and it was my pleasure to act as their tourguide while they were in town. We took them to Rockefeller Center, Time Square, the World Trade Center, and Chelsea Market. Thanks to a wonderful friend , they got to be on the NBC Sunday Today Show.
After all the touring, Sunday evening was the big event. I have to continue to repeat what an amazing event it was. Thanks to all the wonderful people at NY1 who volunteered their time to make this thing happen. They went so far above and beyond the call of duty it is beyond belief.
I would name each of them, but I am so afraid that I will leave someone out, and I dare not do that, that I would like to just thank them all as a whole. You are an amazing wonderful group of people and I must say that I am quite jealosu that my wife gets to work with such amazing people. You all have a friend for life in Melissa and me. I would definitly have your backs in a bar fight. ;>
Though special thanks do have to go to Jessica Abo who ran the whole show (We will definitely be out there cheering for you when you run the marathon). My wife walked up to Jessica's parents at the beginning of the event and told them that they need to write a book on parenting if they could produce a child that was this good and generous to people that she had only recently met. I could not have said it better myself.
The party itself was amazing. The location of the Chelsea Art Museum was beautiful. The food was delicious. The drinks flowed freely. The band was amazing. People danced their butts off. We raised a bunch more money in the silent auction , thanks to the generosity of all the people who came.
The fact that 400 people would come for this event just boggles my mind. Most of them had never even heard of Emanuel Syndrome. Many of them were family, friends or co-workers of Melissa and I. Then there were the people who we had not spoken to in years who came. It was so wonderful to see them again at such an event. Then there were the complete strangers, who came because it was for a good cause.
In the future, whenever I have to deal with bad or uncaring people (and I am sure I will), I will not let it get me down, I will not become pessimistic from it. All I will have to do is think of all the people who worked on this event, came to the event, and gave for this event. It will let me know that there are some damn good people out there.
Unfortunately, there were a few people who we were hoping to see who did not come, but since it was such a wonderful evening, I can only look at it as being their loss.
I was incredibly emotional all weekend but I kept it together pretty well throughout the event. That is until I came up to speak and thank everyone who was there. As I started to thank everyone, my eyes just filled up with tears and my voice cracked. I barely got out the following sentence. "When you are told that you have a disabled child you feel so alone in this world. Watching everyone who came here tonight to support this event, I don't feel alone anymore."
To top of the evening, we met another family with a child with Emanuel Syndrome. We had no idea that they would come. They heard about the event and came and introduced themselves to us. They have a 12 year old boy with Emanuel Syndrome and they are from Long Island. I was stunned. After nearly 3 years of searching for another local family we had finally located them. Emanuel Syndrome might affect only 1 in 10 million kids, but there are 18 million people in the tri-state area. Based on the numbers, I knew they had to be out there somewhere. We will definitely be getting together with them in the near future.
To continue on how amazing and wonderful NY1 has been, they had a camera crew at the event and they have posted a story about it. You can see the video from the event at: http://www.ny1.com/Default.aspx?ArID=86766
Once again thank you to everyone who participated in this event. You have truly made a difference in the lives of people who are dealing with an incredibly difficult situation.
You will always have a friend in me...
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3 comments:
beautifuly said.. you totally made me cry.. i wish i could have been there..congrats..if you find that today show peice post it..
Oleg, there are just not words to describe the moment of meeting another family dealing with what we deal with. I remember being so terribly afraid but once the moment came it was like being in a room with old friends. It's one of the most amazing and strangest feelings I have ever experienced.
I am so glad the benefit went so well and that you were able to experience another family. It's so important.
I could write a book about the weekend. And I likely will - soon! Oleg, thanks for this blog, and your family, and all that you are doing - and did - for me and C22C this past weekend, and ongoing....your family's addition to our group has brought so much to C22C - I think you are one of the coolest Dad's ever and so incredibly honoured to have gotten to meet you all. Dylan rocks - as does Melissa, Ethan and little beautiful Ava! Thank you SOOOOO much for being the tour guide and new friend - and the other kazillion things that I'd need to mention....but it would take forever! I love you guys with all my heart!!
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