As many of you know Makily, my sister Elizabeth and I attended a conference for families with chromosome 22 disorders in July of 2006. On top of being able to attend thanks to FORE THE CHILDREN'S generosity to our family, it was the most memorable trip of my life.
Without the funding for FORE THE CHILDREN we would not have been able to attend that conference. It was in Canada and we could never have financially done it.
My point is that families like mine DESPERATELY need to attend conferences such as these. When your child has a rare disorder there is a strong sense of never fitting in ANYWHERE. I feel "abnormal" most of the time, I had grown used to being "different" and when I went to the conference it was the first time I felt like I belonged.....like my child belonged....like we were "normal" in years. There was no moment that I felt like someone was staring at Makily, she was accepted just the way she is. The love for all of these children was apparent, I connected with people I had known literally hours on levels that I can't even describe. Each child touched me in one way or the other. There were several children that I found myself intently watching with tears in my eyes. Children doing things that I was told Makily NEVER would. Children far surpassing the expectations the doctors gave us for her on the fateful day in April 2004.
This year award winning journalist Jessica Abo has organized a fundraiser that will benefit CHROMOSOME 22 CENTRAL along with assisting families in attending the next conference planned for the summer of 2009.
Jessica does not have a child with Emanuel Syndrome, she had never heard of it or met a child with it. Melissa Rabinovich is a producer and works with Jessica. Melissa's son Dylan was born with Emanuel syndrome. When Jessica learned of Dylan's diagnosis she wanted to do something to help. To read about Dylan and his family CLICK HERE!
The fundraiser sounds like it will be A HUGE affair. Not only will it help with families to attend the conference and benefit chromosome 22 central, it will raise awareness on what Emanuel Syndrome is. I still find myself educating Makily's doctors about it. I know all the other families go through this also. It's hard enough dealing with all that goes into raising a special needs child but to feel like you are ALSO responsible for being medically educated on it brings it to a whole new level.
I want to thank Jessica Abo, Dylan's family, Stephanie St.Pierre and everyone involved in organizing this event. At times I get so frustrated with with life in general that I find myself wondering what happened to all the good people. Then someone does something so selfless like this and it reinforces my faith in the good of us all.
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.
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