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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, July 7, 2017

Connor (and family) got to meet the Chainsmokers again and go to their concert!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I can't believe this evening happened!  Connor has had a love for EDM like no other for over 3 years.  Now at age 9 his love continues to grow.  For the Chainsmokers it started with #Selfie, then Kanye, then Roses and Split (Only U) with Tiesto where he LOVED the video.  Don't Let Me Down and Closer were then favorites when they came out.  Connor loves to sing along to all of them!  Then the Chainsmokers had an Album and were going on tour!  "Heaven!" as Connor would say.  Connor's favorite on the album is "It Won't Kill Ya!"

Kira, Connor, Liam, Jon and Keely at dinner before the concert
As we were walking in to get our tickets and backstage passes, I still couldn't believe we were at the Garden in Boston.  Connor had already met Alex and Drew in December and even saw them perform at AMP Radio's Electric Bounce House (he went totally crazy)!  I kept thinking that Alex could have said no to seeing Connor again . . . he could have said "not this time".  But he didn't . . . and we were there and Connor was ecstatic!  As were the other kids!  That alone was amazing and speaks VOLUMES about how much the Chainsmokers appreciate their fans.  It still blows me away and brings me to tears!

We were bummed though that Declan, our third son, wasn't able to make it because he was sick so the ride in to Boston was pretty quiet.  Not the Singing-Out-Loud-At-The-Top-Of-Your-Lungs to the Chainsmokers that I had envision but everyone was still quite excited!  So we got in early that evening and ate dinner at Tavern in the Square at North Station.  We were surprised by the lack of expected traffic and the ease it was to get to our pre-paid parking.  No line either to get in the restaurant that had a kids menu and gluten free menu.  Sweet!  We had a yummy dinner and then were on our way!!!

In preparation of the Chainsmokers coming to Boston, Liam and Connor sang a parody to Paris to beg for tickets.  They were super cute but the other kids wanted to be included too!


Declan and Keely  were the backup dancer because they couldn't read quite as fast as was needed.  But they did an amazing job!



When I sent the Chainsmokers the video, they loved it and we emailed back and forth to set up plans for tickets to their show!  The kids were on cloud 9 that they could go to the concert and LOVED that they liked the video.  They worked really hard for 3 months to practice!  Getting a reply back from them was like Christmas to them honestly!  The kids wanted to sing to Alex and Drew but got a little shy when they actually met them so we did "their song" the day after the concert and sent it to them.


So once we were in the Garden, got our tickets, then we started to put ear protection on and tried to figure out where backstage was . . . and Connor was already dancing!



We got backstage and a gentleman went to get Alex who came right out!  I said "Connor . . . look who is coming!"  Connor said "Drew?" (so did Keely because Connor did) as I turned his chair around to see Alex.  We just laughed nervously since again, it was the wrong name.  There are only 2 of them yet Connor gets confused by them.  Lol. Go figure!  One of Autism's mysteries.

I was super discombobulated so didn't even get photos (sigh!) but did manage to introduce ALEX to everyone.  Alex chatted with us and was really just so nice.  He asked about the posters that the kids worked really hard on and their shirts.  We all got hugs (Liam was SO EXCITED about that) and Connor too!  He needed to go eat so it was quick good-byes.  As he was leaving Keely yelled down the hallway "Bye Drew!"  Smack.  My.  Head.  Thankfully he took it really well and just waved.  AGAIN . . there is just 2 of them!!!

They even posted Keely and Liam on their Instagram story!  Super sweet!


So we waited for a little bit and saw Drew coming down the hallway and I turned to Connor and said "Connor look who is coming!"  Connor turned and said "DREW!"  Drew got the best most excited hello from Connor (with the correct name)! Drew even remembered Connor and said "you were the kid who went crazy, right?"  He needed to run off too but Connor and the kids were in awe!

Keely and Jon
Us before the concert!

Then it was time for the concert which was unbelievable!  It was really just such an incredible concert!  The kids (and Connor especially) loved it as did we.  Connor said his favorite was the remixes and the lights.  Here are some videos of Connor enjoying it (Jon had the other kids with him).










I wanted to thank you the Chainsmokers too.  Music is something everyone loves. And it means more to us because it's something that has connected our family and especially Connor. When Connor was diagnosed with Duchenne Muscular Dystrophy there was such desperation and despair it truly took us two years to accept it. And then when Connor was diagnosed with Autism we didn't know how he would be. We had no idea if we would have any kind of connection with him. But once he discovered music, especially EDM, it felt like we were a family since it was all of us being in HIS world.  It is truly something that he LOVES without barriers and without inhibitions.  Autism can be pretty isolating so having music in common for us has been amazing!  And Connor loves to dance which is such a beautiful thing to watch because we know it won't be forever. So THANK YOU for creating music that has connected our family and brought such joy to us all!  It has truly given us something we can share!!  And thank you for the tickets, and the passes and meeting us again and seriously being such great people.  All our love, from the Mullaly Family


The kids worked hard on their signs!

06/02/17