Awareness Spreading Like WILDFIRE.

I couldn't be more excited about this!

One of the most difficult things for me when Makily was diagnosed was when they told us there was no one else. We had no clue what to expect and I was MORTIFIED of the future.

I felt incredibly alone.

Times are changing!

Stephanie St.Pierre founder of chromosome 22 central (and I'm proud to say a close friend of mine) started a support group more than 10 years ago for families like ours. I can't say enough about her. She was the person I would email or call late at night and tell all my horrible thoughts and fears to when Makily was first diagnosed and everything was such a mess.

Here is what I am so excited about.

I had blogged earlier about a benefit being held in New York. The monies raised are going to go to help other families of children with chromosome 22 disorder to attend the conference next summer in Niagra Falls.

The benefit is being held tonight and it seems to have stirred up interest in Emanuel Syndrome.

This story aired on NY1 news last week sometime. It is about Dylan Rabinovich. His mother Melissa works with NY1 and helped to organized the benefit.

CLICK ME

Is little Dylan a doll baby or what?!

I wish I could squeeze his cheeks!

This is a video that Stephanie put together to show at the benefit. Makily is in there. Look for her.



I am so honored that my baby's angel face was shown to all these people.

Stephanie has told me many times this past year that instead of getting emails from new parents saying their child has "Partial Trisomy 11,22 aka supernumery der 11,22 syndrome" they are saying "Emanuel Syndrome". The name is getting out there, doctors are learning about it and that is so important. I am hoping that one day no parent will ever be told that there is no one else. That they will immediately be directed to Chromosome 22 Central where other families are that can help them. Other families that have been in there shoes before and are still here to talk about it. To give hope and support to them.

If you are interested in making a donation towards helping other families attend next summer's conference PLEASE PLEASE PLEASE visit this page:

CLICK ME TO DONATE

You will see several areas there to make personal donations. I urge you to give. I can't begin to tell you HOW AMAZING it was for me to meet other families with kids like Makily. It is almost a sin in my mind that a family in our situation would not be able to experience that due to financial constraints.

To learn more about Emanuel Syndrome and other chromosome 22 disorders please visit:

CHROMOSOME 22 CENTRAL

Stephanie St.Pierre and a few others were on the Today Show today. I missed it but if anyone finds the link to watch it please let me know.