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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

Friday, February 17, 2017

Connor got to meet and hang out with DON DIABLO!!

In December we were lucky enough to go back to New York to meet Don Diablo, another favorite EDM artist!  It was a challenging trip at times but we had fun!

On our way to New York City!  Liam was an incredible helper to Connor on the drive!

Before we left, the kids wanted to make some art for Don.  Connor made a skeleton,  Liam made Batman, Declan drew Batman and Joker, and Keely colored in some Don Diablo art.  When we met him later, he snapchatted their masterpieces!

 

When we arrived, we ate dinner at the hotel and made Don Diablo symbols with wiki sticks provided by the restaurant.  We were so thankful they gave the kids something to do and they had lots of fun making different creations!



The next day we saw the September 11 Memorial Reflecting Pools, Statue of Liberty and Ellis Island!  We were so thrilled to see Ellis Island because Connor was doing a unit on it at school and thought he would be able to understand it more having visited it!  It was cold and windy though!

 
This was also our first experience using Uber which awesome honestly!

 
Connor had a major meltdown from Ellis Island, back to Battery Park.  He was saying he was choking and wanted to get off the boat which was pretty packed.  He was crying, I was crying, Keely was asking me why I was crying.  I told her sometimes Connor's Autism is hard and an incredibly nice couple gave me a tissue and tried to talk to Connor in a wonderful British (I think) accent.  He calmed down and they helped me, Keely and Connor off the ferry.  I am so incredibly grateful these kind people said something and tried to help.  It sincerely restored my faith in humanity.  

 

We told them this was only time it's okay to pick a nose!



Then we got to meet Don Diablo that evening!  Connor was so excited and so were all the kids!



Don was super sweet with all the kids, doing face-swapping (Connor's favorite) and snapchatting!  Don even mentioned Duchenne Muscular Dystrophy in his snap!  It still amazes me!  Connor truly loved it!  Thank you so much!!

The next day we went to the saw the huge Christmas tree at Rockefeller Center!  It was 94 feet high, 56 feet wide and the second tallest ever!

 

Then we attempted getting into the Lego store.  We had no idea how many people would be there but luckily we got in quickly!


Off to my NYC office which was a huge relief for the kids to sit with their Legos and a snack while we checked out the skyline!






We didn't realize Connor's set would take HOURS but Liam helped put it together at the hotel.



Enjoying some snuggles and laughs!


Plus some really intense giggles!


And sometimes you just have to dance to your jam!


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