Death in the Family

I have very sad news to report. Reese Kostjuk died yesterday on the day of her first birthday. Like Dylan, Reese was born with Emanuel Syndrome. Unlike Dylan, she had much more severe medical issues. Those medical issues have kept her in the hospital for most of her short life.

The world wide Emanuel Syndrome community is tiny. Those who talk about Emanuel Syndrome in a public way like a blog are few and far in between. The Kostjuk family was one of those who blogged about what it was like living with an Emanuel Syndrome child. I had been following their story on http://kostjuk5.blogspot.com/ for a few months now.

I had been hoping that Reese's medical issues might improve in the next year and we might possibly see Reese in Niagara Falls in 2009. Sadly, that will never happen now.

I have never spoken to them. The only communication I have had with them is an occasional comment I left on their blog. We have next to nothing in common. As you can see from our 2 blogs we have very different views on religion. Despite this fact, we had something in common that very few people on this planet have. Our children with Emanuel Syndrome.

This commonality in some way connected me to this distant family. I regularly followed their blog to see how Reese was doing. I was happy for them when she was able to leave the hospital for a while. I was worried for them when her condition worsened. It broke my heart to hear of her death. It brought tears to my eyes. I am truly sad for their loss. They are experiencing the worst thing that can happen to anyone in this life. The death of a child. A parent is never supposed to bury their child. It is our child's job to someday bury us, not vice versa.

An event like this of course makes me think about the possiblity of the death of my own child. The thought terrifies me. I am not sure that I could survive if something like that happened to me.

The one fact that does console me is the families faith. It does seem to provide them with comfort and will help them get through this horrendous event.

The Emanuel Syndrome family has lost another member. This sucks...

More on The Don't Stop Believin' Benefit

This is very cool. The benefit was written up on charityhappenings.org. To see the story, please go to: http://charityhappenings.org/article/the_dont_stop_believin_benefit_for_emanuel_syndrome.html

You can also check out the c22c facebook page which also has a bunch of photos. Go to:

http://www.facebook.com/event.php?eid=74862165313&ref=mf

http://www.facebook.com/album.php?aid=8417&id=1011065482&ref=share

http://www.facebook.com/album.php?aid=77289&id=537550658&ref=share

Once again just another thanks to everyone who attended, donated, and helped out. It is amazing that checks are still coming in. People have seen the stories on NY1 and the Today show and on all the various websites and they continue to respond.

If you read this blog and haven't yet given anything, I would kindly ask you to give what you can to this organization. It does not have to be a big donation. If $10 is all you can send that would be wonderful. Thanks in advance for your generosity...

The Don't Stop Believin' Benefit

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...