Jesscia Abo

I have never met Jessica or even spoken with her. Yet here I am listing her as one of the good people. Jessica works with my wife, Melissa, at NY1.

One day Jessica heard about Dylan and told Melissa that she wanted to help.

Jessica told Melissa that she was going to do a fundraiser for C22C to help support the 2009 Niagara Falls Meeting.

We have been hoping for a 2009 Niagara Falls C22C meeting but had no idea how we would plan for it or how we could help people get to it.

We had missed the 2006 meeting as Dylan was just born when that event happened and we were not in any shape mentally to attend at that time. Now we of course regret not having attended in 2006.

A 2009 meeting would allow us to meet with other families with Emanuel Syndrome children as well as other chromosome 22 syndromes. We would able to discuss the issues that we deal with on a daily basis with other people who understand what we are going through.

We know that it can be financially difficult for many of these families to make it to the event and we wanted as many people as possible to come to the next one.

Melissa tells me that one of her co-workers was going to do a fundraiser for Emanuel Syndrome and my first reaction was a cynical one. What is she getting out of it? Does she have a family member with it? Do we have to pay her for it?

The answer to those questions was Nothing, No and No. Jessica created, planned, and coordinated the fundraiser completely on her own.

Why would she do such an amazing thing for people who she barely knew for a syndrome she had never even heard of before. She did it because it was the right thing to do.

My next reaction was thanks for the kind thoughts, but what are you really going to do?

Boy were we about to be surprised.

She decided that she was going to create a fundraiser for c22c. She found a location for the event. She got other people to volunteer for the event. She joined the c22c board of directors. She got people to donate items for silent auctions and goodie bags. She got people to attend the event. She took the ball and ran with it. She has coordinated information with Dr. Emanuel and talked to Stephanie St. Pierre on how the funds should be spent.

She has inspired me to want to help out as well. Melissa and I are doing everything possible to support the fundraiser. I have gotten most of my family and friends involved in one way or another.

Thanks to Jessica's efforts with the fundraiser, we will be able to help a lot of people attend the 2009 C22C conference event next year. We are currently expecting 200- 300 people to attend the event. I am hopeful that we can even get more that that.

Anyone who is reading this, I would kindly ask you for your help with the event. The fundraiser will be on October 5, 2008.

Below I have listed the press release for it. Anything you can do to support it would be incredibly appreciated. We would love to see as many people as possible there. If you can make it, that would be wonderful. If you can't attend, any other kind of support that you can provide would be amazing.

Thank you to everyone in advance for their support and especially thank you to Jessica for making all of this possible...

The “Don’t Stop Believin’ Benefit”

About

About Emanuel Syndrome and Dylan

On December 9, 2005, Melissa and Oleg Rabinovich went to the hospital ready to welcome their second child into the world. But as soon as Dylan was born, they knew something was wrong. Dylan had very large extra pieces of skin around his ears and suffered from something doctors called “failure to thrive.” It was not long before Melissa and Oleg learned their son had a very rare and severe genetic disorder called Emanuel Syndrome. Instead of having the 46 normal chromosomes most of us are born with, Dylan was born with 47. The extra chromosome, comprised of small parts of Chromosomes 11 and 22, prevents Dylan from walking or talking. Children with Emanuel Syndrome often endure hours and hours of therapy a day including: physical, occupational, speech, feeding and special instruction.

Emanuel Syndrome is a rare disorder. It is unknown how many children have it, but since the establishment of the support group Chromosome 22 Central, Inc., at least 200 families worldwide have identified themselves as having children with the disorder. Children living Emanuel Syndrome have severe developmental delays and countless medical issues. Many who are born with the disorder die within the first few months. Those who don’t are expected to have shortened life-spans.

But 2-year-old Dylan is defying all odds.

NY1 News Anchor Jessica Abo first learned about Dylan after she started working with his mom Melissa, an executive producer at the station. Jessica had been planning on running the 2008 ING New York City Marathon for several months; and after learning about Dylan, she decided to run the race in his honor, and to organize a benefit to help families around the world living with the devastating diagnosis.

The “Don’t Stop Believin’ Benefit”

Ben

Benefit Details

The benefit will take place on Sunday, October 5th at the Chelsea Art Museum in New York City. NY1 News will be covering the event. The evening will include a V.I.P. reception featuring TV personalities from NY1 News and “America’s Most Wanted” correspondent Jon Lieberman. Tickets for the event will start at $125 for general admission and $175 for V.I.P. Guests will have an opportunity to enjoy an open bar, fabulous food and desserts, live music and a silent auction.

Who We’re Helping

Stephanie St-Pierre created C22C 12 years ago, when her daughter was born with Emanuel Syndrome. Living in Canada, she was told that there was no other child in the country like her daughter Maia. Refusing to believe that, she set out to find other families and as much research as possible. Over the years, Stephanie has gathered family surveys and countless journal articles. Today, Stephanie’s charity is the primary source for parents trying to understand their child’s diagnosis. To help Stephanie with her efforts, Murney Rinholm started Chromosome 22 Central, Inc., a 501(c)(3), which is based in North Carolina. Currently, Stephanie, Murney and Melissa are working on C22C’s 7th annual conference, which will take place in the summer of 2009. The retreat will be the first and only opportunity some families will have to come face-to-face with people living with Emanuel Syndrome and other chromosome disorders. We hope the money we raise will defray the costs of the conference so that more families from around the world can come together to share their resources, knowledge and support.

Get

Get Involved

Our list of sponsors/partners currently includes:
· Arthur Ashe Youth Tennis and Education
· Chelsea Art Museum
· Crayola
· Estee Lauder
· Marc Dorfman Photography
· Poof-Slinky
· Warren Levi Karate
· NY1 News
- Running Center

We are very fortunate to have generous organizations on board that are providing a space, gifts for a silent auction, food and monetary contributions, so we may give all of our proceeds to C22C, Inc.

The “Don’t Stop Believin’ Benefit”

Sponsorship

$100

- Business Card included in event journal, which will be distributed to 500 guests

$500

- Corporate logo included on invitation

- 1/4 page ad in event journal

$1,000

- Corporate logo included on invitation

- Two tickets to V.I.P. reception

- 1/2 page ad in event journal

$2,500

- Corporate logo included on web invitation and souvenir T-shirt

- Four tickets to V.I.P reception

- Full page ad in event journal

$5,000 or more

- Corporate logo and link included on web invitation

- Corporate logo included on souvenir T-shirt

- Eight tickets to the V.I.P reception

- Full Page ad in the event journal

- Logo printed on “Step and Repeat” banner

(This banner will serve as the backdrop for formal photographs when people arrive at the event)

Donations to Chromosome 22 Central Inc., are tax deductible.

The “Don’t Stop Believin’ Benefit”

If you would like to help please contact us teamdylannyc@yahoo.com. Thank you for your consideration and for believing that we can help children like Dylan live to see a better tomorrow.

Sincerely,
Team Dylan

Alyssa Abo, MD
Jessica Abo
Justin Baer
Shira Blumenthal
Lauren Gelman
Tara Gordon
Rachel Hayon
Jason Hill
Sari Lisch
Jonathan Levy
Eli Lunzer
Amy Metzger
Jeffrey Milhalakis
Jill Scott
Heather Shaw
Alana Shultz

Joshua Sigmon
Adam Spoont
Kirk Wagenbach
Josh Zeichner, MD

Stephanie St-Pierre

What do you say about the woman who brought you out of the abyss of abject ignorance and provided you with the shining light of knowledge and information. That is what Stephanie did for Melissa and I.

When we learned that Dylan had Emanuel Syndrome, we had no knowledge to go on other than a copy of a page from a genetics guide that Dylan's geneticist gave us. It did not have much information at all. We had no idea where to turn to. Nobody we spoke with had heard of Emanuel Syndrome let alone give us any advice on what we needed to do.

Then we found http://www.c22c.org. We could not believe that we were finally getting some accurate information on what Dylan had. We were finally able to talk to people who knew what we were going through. We were finally able to provide information to doctors and caregivers. Melissa was able to provide a packet of information to every doctor that we bring Dylan to thanks to the info on C22C. We could not believe how lucky we were to get this information.

My wife emailed the creator of the website, who turned out to be Stephanie St-Pierre. She was this amazingly informed person who would try her best to explain everything she could to us. She would answer all of our questions, no matter how many times she must have answered those same questions from dozens of people before. It wasn't just short yes or no answers to our questions. She would give us these great in depth answers that really helped us at a time when we had no clue what to expect. She was incredibly patient. She never seemed angry or bitter (which was amazing to me as I was very angry and bitter at the time we met her).

It wasn't just us that she helped. We quickly joined the Yahoo Groups dedicated to Emanuel Syndrome and C22C syndromes and we saw that she was constantly on there. She was answering questions from people, congratulating others on their accomplishments, consoling others on their losses. It seemed to us that she never took a break.

While running the C22C website and running the Yahoo Groups, she was also posting to 2 blogs, running a Facebook page for C22C, and running conferences and gatherings for families dealing with C22C issues.

She managed to do all of this unbelievable work while at the same being the parent of Maia, her daughter with Emanuel Syndrome. She also managed to adopt 2 children from China, Jaida and Jaxon. She also works and goes to school.

When the hell does this woman sleep?

She told us how when she had Maia, there was nothing out there. There was no information or groups to help her deal with raising an Emanuel Syndrome child. Most of us having to deal with such a situation would fall into a permanent state of depression or denial. Not Stephanie. She found all the information. She gathered it all together. She used her situation to help others like us.

Stephanie St-Pierre is the heart and soul of the Emanuel Syndrome and C22C community.

Everything she has done for the Emanuel Syndrome and C22C community has made me want to get involved and to help other families dealing with similar situations.

The only bad thing I can say about her is that I couldn't possibly keep up with all of the wonderful things that she does. I just don't think I am capable of doing as much good as her, so she does kind of make me look bad compared to her. ;)

The funny thing is that I am writing so effusively about a person who I have never met in real life. I have only emailed or talked on the phone with her. I am very eager to actually finally meet with Stephanie in real life in a few months.

She is a truly amazing and remarkable woman who I am incredibly grateful for having in our lives. As hard as it may be to raise a child with Emanuel Syndrome, Stephanie and everything that she does has made it a little bit easier...

Melissa Rabinovich

Where do I begin to discuss what a wonderful woman my wife is. She is quite simply an awe inspiring mother. She has done an amazing job raising our three children.

From the moment we learned that Dylan would have issues, she has taken the lead in caring for him and arranging for all of his needs. She has dealt with the dozens of doctors that Dylan has required. She has navigated the maze of bureaucracy to get Dylan the services that he needs whether from Early Intervention, CPSE, or Medicaid. She has fought to get Dylan the equipment he will require to better service his needs.

She has dealt with all the therapists that Dylan sees on a daily basis, keeping up on what they are all doing with him. She has lavished praise on the therapists who do wonders with Dylan and gotten rid of the ones who did not know what they were doing.

She has spent countless hours working with Dylan to improve his physical and mental potential. She has insisted along with me that Dylan will not be shunned or hidden from sight. She has agreed with me that if people want to accept us, they have to accept our son.

Despite the intense time drain that having a child like Dylan entails, she has still managed to be a wonderful parent to Ethan and Ava. She tries to spend as much time as possible with all of our children. She tries her best to share her time equally among all of them so that none of them ever feel like they are ever being neglected.

She also somehow manages to fit in a full time job where she has an incredible amount of responsibility. Fortunately for her, she truly loves her job, otherwise I cannot imagine how she could maintain such a schedule.

With all this on her plate, she still manages to be a phenomenal wife as well. She is the love of my life. She still manages to devote time to our marriage. Compared to most other people, I truly feel we have a strong excellent marriage. We don't have to "work" at our marriage. It just comes to us. Much of the credit for that belongs to Melissa. Though I think I deserve a little bit of the credit as well for our great marriage (Pat myself on the back).

You hear so many stories about women who throw themselves into their disabled children and ignore the rest of the world. Melissa is not one of those women. She has somehow managed to maintain her all her responsibilities as a mother to a disabled child, a mother to 2 healthy children, a wife, and as a television news producer.

Despite everything she has done, she still feels that she does not devote enough attention to each part of her life. That is of course absolutely ridiculous. I guess this guilt she feels keeps her on her toes maintaining this balance.

Melissa is like the worlds best juggler. What she does is incredibly challenging and yet to the rest of the world she makes it look like a walk in the park.

If I did not have someone like Melissa to share the burden of raising a child like Dylan, I do not know what I would have done. Everything she does as a mother makes me want to be a better father and husband.

For all of the above reasons and for many many more, Melissa is the most important "good person" in my life...

The Good People

I have been writing this blog now for a while and upon reviewing it, I have realized that the tone of it can be pretty dark to an outside reader.

My writing makes it look like I am a bitter angry person who has an axe to grind with everyone. It appears that I hate everyone and everything. It looks like I am a total pessimist, who only expects the worst.

Nothing could be further from the truth.

What I have been writing about the negative attitudes in my head account for probably 5-10% of my thoughts. If you met me in real life, you would see that I have a pretty happy go lucky type of personality. I like to think of myself as a fairly optimistic person. I have great difficulties in holding a grudge against anyone. It doesn't take much to get me to laugh and I quite often have a smile on my face.

I have been using this blog to exercise those 5-10% demons out of my head, so they don't drive me nuts. Thus the blog has taken on a very dark tone. I would like to lighten up that tone now.

One of the reasons that I have been able to maintain my happy go lucky nature since the birth of Dylan is that I have received the support and help from some truly great people.

Some of these people have given me direct help, some have helped indirectly, and some have inspired me by the way they have lived their lives.

Over the next few postings, I want to talk about some of those people. This will not be an all encompassing list covering all of the good people in my life. It will be a list of some people that I just felt I needed to talk about.

Please stay tuned to see who makes the list...