Join Connor’s Crusaders . . . to help Connor with the battle for his life!
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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
I will forever be astounded that the EDM community is so amazing to a kid! Connor was lucky enough again to meet another incredible person! Connor has loved so many of Zedd's song and especially "Beautiful Now" which speaks to me as a Mom so much as well! Connor certainly is BEAUTIFUL!
Connor, Liam and Zedd
On our way to House of Blue, we listened to Zedd's CD the entire way into Boston and Connor was extremely excited (and Liam too)! When we got inside, Connor said to Anton "I missed you!" in his typical Connor way. When Connor says these things he truly does mean them. :) Liam talked to Anton about how he's played trumpet and violin and Anton talked about the piano and suggested the guitar for Liam. Anton said he never learned trumpet because he couldn't get the mouth right and that those instruments were hard. Liam was beaming with pride! An exceptionally accomplished musician was saying his instruments were hard! Anton also commented on the Boston accent he heard and he couldn't understand someone who was saying "park the car". The pesky Rs disappear in Boston for sure. Connor asked about the insert that came with the CD as to why are there no words in Bumblebee. Anton said it's Morse code. Connor was amazed!! Connor got a little shy so I told him to tell Anton what his favorite song is. "All of them" Connor said which is also super true. I said lately his favorites were "Paper Cut" and "Done With Love". And "Beautiful Now" is a long time favorite. We asked him about his shoes since we saw them on his instagram and Connor said he liked them. After we met and thanked Anton a million times, they were continuing to set up. We got to see behind these enormous led screens that they travel with from city to city. The amount of power cords behind one of them was crazy! And they had to figure out where it all went! Unfortunately it was getting late so we weren't able to stay for the show and Connor was super disappointed since that what he LOVES more than anything. I told him maybe another time. So we are hoping Zedd comes back to Boston (accents and all) really soon! Also we had no idea the stress everyone was under in trying to get the stage set up. At any given time they could have said it wasn't a good night or even could have cut short the conversation. But that didn't happen which is a true testament to how Anton values his fans. Thank you again! 10/17/17
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
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!
Connor has such an amazing connection to EDM music of all types. One of his favorite kinds is Trance and a long time ago he fell in love with a song called Big Ben from Ilan Bluestone. It started an obsession with the actual Big Ben where we were actually considering going to London for Connor's Make a Wish but thought we should wait. Connor has even made some Big Bens!
Keely, Big Ben and Connor
When we found out that Ilan Blueston was coming to Boston we knew this would be an amazing experience for Connor if we could make it happen. We decided to go to dinner before meeting him which is also a treat in itself!
Connor was so excited after eating he was dancing in his seat while waiting for Ilan. He literally couldn't sit because he was so excited! All the kids (with some adult help) made a TRANCE sign for Ilan and drew some pictures from his songs: Cloud Chaser, Spheres, Frozen Ground, Big Ben (of course), a DJ playing, and a Lighthouse. Ilan signed some photos and gave Connor a CD right from London and signed it!!
Ilan and his management gave each of the kids their own VIP badges too! Connor and the other kids were in heaven! Connor has played the CD nonstop since getting it (we had to carefully take off the plastic shrink wrap and laminated it)!
Thank you so much for making Connor's dreams come true!
March 31st, 2017
Connor is one lucky EDM kid! And we are super lucky that a LOT of his favorites come to Boston. The latest was W&W!
Willem, Connor and Wardt
Willem and Wardt were super nice answering Connor's questions about favorite food: sushi and Italian (so of course Connor said his favorite was Italian too). They gave him their headphones which Connor absolutely LOVED! He didn't want to take them off when we got home and even wanted to sleep in them.
Connor didn't want to take off the headphones when we arrived home!
After W&W left for their show Connor couldn't wait to try the headphones with their music!
The next day Connor made a Caribbean Rave (one of their songs) for W&W and was super proud he could do the W with his hands!
Thank you so much Willem and Wardt for taking the time to meet Connor!
Connor is one lucky kid! He got to meet Cash Cash (well 2 of 3)! It amazes me every single time this happens!
Sam, Connor and JP!
Connor saw them perform at the AMP Radio Electric Bounce House because they were on right before the Chainsmokers and asked with his famous words "Meet them?" Sigh! Ok Connor . . .let me see what I can do. :) Luckily we were able to make it happen!
Connor watching their sound check!
Sam and JP were super nice to Connor and chatted with him a bit. Connor told them "I Like It Loud" was his favorite song. Anything Connor asked Sam and JP, Connor gave their answer back as his own including favorite color. LOL
Connor got to go on the stage and see the equipment!
Connor was SUPER excited!
Connor LOVED the lights and the inflatables! He was totally obsessed!
And each time this happens we count our blessings because this is a LOVE of his in which we found a connection. Music has helped him so much!
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.
