Today was a whirl-wind of emotions. I wish I could say I was cool, collected, and composed the entire day… but that would be a lie. We had a minor glitch just before we began our 2014 Rett Syndrome Awareness Day! (aka Blue Sky Girls) but with quick thinking we were able to get through it, and didnt allow it to ruin an otherwise beautiful event. As hard as I tried not to cry through my speech, I will admit, I did. We had beautiful weather, with 13 Rett girls who came together to climb, or be carried up the stairs at the Crown Point Courthouse Square Historic District. That is over 3x the amount of girls we had our first year! Sophia started us off with a short speech (using her Tobii). We got to visit with Nikki, the amazing 23 yr old Rett Girl living independaltly from her family, and THRIVING. I took a moment to talk about, and asked us all to always remember the brave girls who have lost their battle with Rett Syndrome. Gone, but NEVER forgotten. We meet a set of Rett TWINS. Not only are THEY inspirational, but their mother is, TOO! We watchd little Zoe Prask climb the staris using her #Upsee. All of these girls are my inspiration. They are my reason for so much that I do. I try so hard to spend some time with each family but always feel I could have done more… I honestly appreciate each and every person who attended our event today--We had over 150 people in the crowd today. From Rett families to the friends and extended family members who came to cheer. This event is about ALL of us fighting to raise awareness about the one cruel element we all have in common~ Rett Syndrome. There were SO many people involved in making this day successful. Special thanks to the brave men and women from the Crown Point Fire Rescue and Crown Point Police Departmants who walked with, and carried our girls. Thank you DJ John Edward. His ability to engage the crowd, while teaching them about Rett Syndrome, and ensuring we have a great time is immesurable. Extra thanks also to Happy Day Shirt & Event Company for our killer shirts! From Salon Salon Beauty Parlor for the awesome purple hair, to the girl scouts, for their time, talents, and commitment to our cause. To some of my dearest friends, who always find time to stand beside me and help share our girls story. To my family, who rearranged their schedules, flew in from out of town, and always support us. To my husband, Mike Burke who encourages me, and my sometimes crazy ideas. ;) His love and support gives me the strength and courage to fight and advocate for our girls, and all those affected with Rett Syndrome. These people, and SO many others, all made a difference in our lives today. If I attempted to name each and every person who helped make this day the success it was I would surely forget someone, also #facebook doesnt allow me to tage THAT many people. ;) So please know, I LOVE and APPERCIATE you all! With Heartfelt Gratitude, Mimi
Posted on: Sun, 12 Oct 2014 02:58:30 +0000
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