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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

Tuesday, June 20, 2017

Connor met Marshmello!!!

I can't believe how incredibly nice everyone in the EDM community is.  Connor certainly picked the right genre!

We tried to meet Marshmello in February when he was in Boston but due to an airport mishap, he needed to go right to the show.  We were all in Boston having dinner and everyone was disappointed but understood.  Connor took it very well but Keely cried.  I hate to say it but it was adorable.

The next day Marshmello FaceTimed with Connor.  Connor LOVED it!  Connor first showed him his Marshmello family:

Connor and his Marshmello family
 And then he showed him his Marshmello head and Marshmello asked Connor about lights.  I told him we had to draw the line somewhere because Connor did want lights in there!

Connor is Marshmello

Our family at Abby Lane in Boston
Marshmello
What else would Connor be listening to but Marshmello while at dinner?

Liam and Jon


Connor asked Marshmello all kinds of questions during FaceTime.  We try to prepare Connor with a question or two so he has something to say.  Connor asked what his favorite color was and of course the answer was white.  And Connor told Marshmello his favorite song was "CoLoUR" and Marshmello said that was his favorite song too.  Then Connor asked if he lived in a white house!  Connor surprises us sometimes with such great questions on his own!



We introduced most of his siblings and Connor asked about Marshmello's favorite food which was vanilla ice cream and favorite vegetable which was coli flower (through a suggestion from Liam), then we asked about his lights and if maybe he could turn them on.  Marshmello said he could see his brand new helmet with the lights!  Connor got a sneak peek before anyone else!

So in May Marshmello came back to Boston for AMPLive!  It looked like it wasn't going to work out for them to meet but it actually did at the last minute!  I was looking for a babysitter the same day so I could get Connor to the actual concert.  I am so glad the stars aligned to get him there!

Thankfully Katie (she was super super nice) retrieved us from the streets of Boston since I was pushing Connor around in circles.  Connor and I went to a reserve section right next to The DJ booth. Connor wanted to dance because he loved the music.  Tone Terra and Vanessa "are doing a great job" Connor said. We went back to the meet and greet area for a little bit but Connor wanted to listen to music until Marshmello was ready.

Then we got called back by the marketing manager for the meet and greet. When Marshmello came in I thought Connor was going to run over and give him a hug.  But he didn't and he patiently waited his turn. We took some pictures of Connor and he asked Marshmello what his favorite place was. Of course he said Boston. A few more people took some pictures and then we brought the photos for Marshmello to sign over to him. Connor picked one and Marshmello signed it.  He actually complemented us on organization and the fact that we had a black sharpie. :)

Then we went back and waited for Marshmello to start.  Connor was super excited. We met another person there that worked with special needs kids.  It was really nice to bump into somebody with experience with kids on the autism spectrum. It's so funny that we keep on finding people like this.  At Porter Robinson's concert there was a woman that worked with kids with special needs that helped us leave without loosing anyone.  It's amazing to find people that are so nice.

Connor loved the music!  He was dancing in his stroller so much that I had to lock the wheels. He was getting tired though but I checked in with him about every 15 minutes. When he said he was tired I asked if he wanted to leave and he said "No, Marshmello will be sad!"  It's a good thing we didn't leave because a few minutes later Connor was invited up to the very front with bodyguards so he could see Marshmello from the very front row.  Connor loved it!  He love the screens!  He love the LEDs and he loved that Marshmello waved to him!  Connor was beaming!



Then Marshmello took the mic and said "Hi Connor!"  I thought Connor was going to faint in my arms as he was singing at the top of his lungs "Hello" by Adele. He just loved it!!  Everyone around Connor was smiling and watching him and I could just see the joy that everyone experiences when Connor is really enjoying himself--it's just miraculous.

Then one more song and it was time to go. The kid is a trooper!  He stayed awake the whole way home and went to bed at 12:30.  He slept in a little.  :)

Connor and Marshmello
And of course there is always dancing after!


Marshmello has had such an impact on our family, Declan, Connor's younger brother choose to write about Marshmello for the end of year "Author's Tea."  Here are some pics!





05/07/2017