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Connor is an amazing 12 year old boy with Duchenne Muscular Dystrophy and Autism. Duchenne will put him in a wheelchair between 10-12 and sometime in his twenties it will claim his precious life. The dreaded clock is ticking and before we know it, Connor will be immobile. Modifications are being made to make our home handicap accessible. To donate via GoFundMe: http://www.gofundme.com/drp2yw

Wednesday, November 19, 2014

Connor met STEVE AOKI!!! With pics and videos :)

Photo credit Cesar Sebastian
For a long time, Connor's favorite music has been EMD/Dance.  He loves the beat and fast tempo and the fact that he can move and dance to the music  despite his Duchenne Muscular Dystrophy.  Steve Aoki's music has been his favorite for equally long.  Connor got to meet him November 15th!  Steve was warm and caring with Connor and they even pretended to be in a Tornado together.  Connor loved every minute of it and it was truly a priceless experience!  Thank you so much Steve for a truly beautiful memory Connor will have forever!  We are forever grateful!
Kira and Jon

The evening started with Sandra from Foxwoods escorting Connor, Jamie (Connor's Aide) and me backstage to Steve's dressing room.  Sandra was wonderful with Connor even pretending with him in the elevator.  When we got to the stage there was a loud generator blowing up rafts.  Connor was scared and unsure of going by it so the guy turned it off so Connor would be okay.  This was just the first clue of what an incredible experience this was going to be.


Photo credit Cesar Sebastian
When we got to Steve's dressing room, Steve greeted Connor with a giant "Hi Connor!"  And Connor had the biggest smile I have ever seen and said "STEVE!"  It was the best moment on earth for him!  Steve started singing Connor's favorite song "Boneless" and Connor wanted to dance, but he also wanted Jamie to hold him.  Connor did get down and dance a bit with Steve Aoki--it was truly amazing!  They talked about their favorite songs (Connor changed him mind that day and said Tornado as his favorite) and Connor gave Steve a birthday card.  Steve really appreciated it and even told Connor it was the first birthday present that he'd gotten.  Steve loved stick figure Steve from the card and could tell it was him.  Connor was beyong thrilled.  They also discussed the other drawings on the card.




Photo credit Cesar Sebastian
Connor relaxed while we spent time with Steve.  An incredible ice breaker was Steve watching Connor dance to his song on YouTube.  Connor kept commenting on the video and described all sorts of things about it including his brothers and sister in the video.

For some reason we wound up on the floor and in the doorway but Connor seemed to be comfortable there so we didn't dare move since he was having such a wonderful time.  And the awesomeness continued!  Steve and Connor pretended they were in a tornado and Connor just loved it.  Then Connor turned the floor into a black hole and told us some cool stuff about that.




Photo credit Jamie Carreau
And then more amazing things happened!  Steve started calling so many of his friends and Connor got to talk to DeadMau5 on FaceTime (this is Connor's second favorite artist).  Connor was a tad confused because he's used to seeing DeadMou5 with his Mouse head on.  Steve and Connor were even taking Selfies and texting the photo to his friends including Tiesto (Steve did that song with him for Tornado) when Steve couldn't reach them.

Steve and Connor hung out on the couch too while Steve signed some things for us.  Connor wanted to sign some things too and took the same notebook (as Jamie and I hyperventilated) and started drawing.  Connor was even signing his name too--it was so cute!  Steve even call his girlfriend and Connor got to talk to her even pronouncing her name correctly.  Fun fact--Steve and Connor are both lefties!


Photo credit Cesar Sebastian
As we were getting ready to leave Steve offered Connor some fruit (Connor's favorite).  Connor chose an orange and Steve even offered to peel it for him!  Jamie and I peeled it while Connor and Steve just hung out talking about what they liked.  Connor finished the orange and it was time to go.  I could tell Connor was sad but he was tired too.  We took a few more photos and then off we went.  Of course on the way out Connor heard "Bad" by David Guetta (still have no idea how he heard it since it was so loud there) and had to dance to it despite being tired.  Dancing is what motivates Connor and we love watching every minute of it!



Maybe Connor will see Steve in the NeonFuture!


For more information about what we are currently trying to do for Connor (home modifications) you can visit GoFundMe:  http://www.gofundme.com/drp2yw

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