Saturday, October 13, 2012

Blue Sky Girls

So after a day full of information from all of her wonderful doctors, it was time to take part in the the 2nd Annual Blue Sky Girls Event in New York.  What is the Blue Sky Girls event?  More about that in just a second.

Here is Roger and Olivia grabbing some breakfast at the Hilton before heading over
And here is Omi and me doing the same.
And then off to the Tweed Courthouse in NYC.  So the event is the idea of the wonderful Dr. Djukic.  She calls it "Blue Sky Girls" because she honestly feels like the sky is the limit for these wonderful little girls.  What was once thought of as a death sentence, to her has so much promise for treatment and one day a cure.  So we all gather together to spread awareness and to ask for one very important thing, to give these girls the same opportunities for education as all kids. "Do not confuse my silence for lack of cognitive ability". 

So she gathered New York's finest - the NYFD to help with the event.
This is our friend Emma.  Her mom, Jen and I have been friends for years.  I had the pleasure of meeting Jen at a training that Dr. Djukic held about 2 years ago, but this was the first time our kiddos could meet.  We were so excited!
Here is Emma giving Juliana a kiss.
And this is Emma's Sister Sarah.  Her and Olivia were fast friends.
And then it was time.  Dr. Djukic took the stage and gave this amazing speech.
Cliff notes to my favorite parts of her speech - 1. That despite all the people present, her speech is directed at our girls. 2. When she introduced the Fire men and said that "those who can will climb the stairs and those who are unable will be carried up by the NYFD and we will transform their wheel chairs into princess thrones. 3. And the part at the end where she reads a description of Rett Syndrome written by a girl with Rett Syndrome. 

All three parts made me cry and also feel so proud to be Juliana's mom!

And here is Juliana climbing all 30 steps in front of the court house. If you haven't watched the video, Dr. Djukic says the stairs are symbolic.  Climbing stairs move us forward and upward - which is where our girls are going.  We were so proud of her.

And then at the end balloons were released.

Some balloons like this one said "Anna Banana" on them.  In memory of our sweet Anna.  She is always in our hearts.  She was a fighter and I would like to think she is Juliana's angel.

Dr. Djukic - you have a very special place in our hearts.  Thank you for all your hard work and your passion.
Another incredible lady - Monica Coenraads, Executive Director of the RSRT. 

And these are the incredible siblings.  Alli and Sarah both have sisters with Rett Syndrome.  It is amazing to me, (1) how quickly this trio bonded and (2) how mature they all are.  Sisters Rock!
Here are the sisters taking their turn at the steps!

After that it was time for lunch.  Juliana was so happy just hanging out with Emma.  And I love that Emma chills out with her leg propped up.

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