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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, November 29, 2016

Connor (and family) met Porter Robinson and got to stay for the show!!!!

We simply can't believe it!  Connor was able to meet Porter Robinson and stay for his show!

We had been in contact with his team and they agreed to Connor meeting Porter (and we brought the other kids along).  They offered for Connor to stay to watch the show!  Connor was so excited he cried that morning when it was time for school because he wanted to go "right now."  He made it through and off we were to Boston for dinner first then the show.

We got into Boston on a very rainy night.  We were late getting to Abby Lane but they were super super nice and held our table for us.

Thankfully Jon dropped us off so we could get out of the rain while he went and parked.  We would have gotten there a little earlier had Google Maps not had us walk around in circles.  We finally just asked someone where Abby Lane was and they helped get us in the right direction.

Keely enjoying her spaghetti (or pascetti as she says)

Us at Abby Lane
We had our delicious meal which the kids loved and we were off to the Orpheum Theater!

When we arrived we got our tickets and were brought to our seats.  Everyone there was so nice!  Connor was already bopping away to the DJs already playing.  Once we were settled it was time to meet Porter!
Connor and Porter

Porter was so nice and was genuinely touched by all the fanfare about him.  Each of the kids made something for Porter.  Connor made a card that said "Thank you for meeting me.  So excited for the show!"  Connor was so excited that Porter said he was talented.  "I'm talented!"

We gave Porter some Connor's Crusaders bracelets and he said that he and Hugo (Madeon) would wear them during the show.

We showed Porter the video of Connor and Liam doing their own version of Dance Dance Revolution and Connor declaring "I'm gonna win!"

Porter and all the kids

Porter and all the kids (you can see Keely's Rin Bow)
Connor had a little bit of time to ask Porter about some of his favorite things.

Porter's favorite colors:  pink (like Keely's bow) and light blue
Declan said black like his lego guy that he showed Porter.

Connor said his was green and purple.

Porter's favorite food:  pizza
(Liam high 5ed Porter over favorite food.)  Connor said pizza too.

Porter's favorite subject:  Science
Declan said "I love Science" and Connor said "Me too!"

When the show started, we could see the bracelets and Connor was so excited!  He loved it!!



The next morning (after Connor had slept in late) he asked for pizza for breakfast.  Sure thing Connor!

Wednesday, August 24, 2016

Connor saw Martin Garrix's show . . . . and got to meet him!

First I can't believe this happened!  Connor got to see Martin Garrix at the Billboard Hot 100 Music Festival in NY!  He was so excited to go and loved being up past his bedtime.  This what everyone looked like before the concert started.  We got to be in the VIP seating and were so close!


This was his reaction when it was time for Martijn to play (yes I cried several times . . this was one of them):




Connor did get overwhelmed a bit but stuck it out.  He danced to Turn Up the Speakers (I cried):


Connor even let me pick him up to see better (I also cried here too):


Martijn came out and Jon swiftly got Connor out of the stroller to go over to see him (Connor did the thumbs up completely on his own):


Connor even got to ask him what KeyGen means (after he asked where the bathroom was) which he has wondered about for over a year!


It was an incredible show and Martijn did an amazing job as always.  No one could believe how close we were.  Liam, our 10 year old and Keely, our 5 year old REALLY enjoyed themselves (Keely is a party animal and it's a tad concerning at 5).  Declan, our 6 year old sat back and enjoyed:



All the kids LOVED the confetti and the fire and the fireworks.  They thought it was the coolest thing ever:




Connor enjoying the confetti:


Connor just LOVED the concert!  Thank you for making it possible!


These are the shirts we made just in case we were able to see Martijn:



Because Connor is so young it's been hard to find a place where he could actually go and listen to his favorite music live so this was an incredible treat for him!  I asked him the next morning what he thought of the concert and he said "It was awesome!"  Thank you so much Martijn for making Connor's dreams come true!

Here are some more YouTube clips from Connor dancing!  This is Martin Garrix's set:
https://www.youtube.com/watch?v=ogCfYMs2O5k
Connor's awesome moves to Bouncy Bob:
https://www.youtube.com/watch?v=t3V7GsDMF7Q
Connor made a comic for Martin Garrix:
https://www.youtube.com/watch?v=WJBuCHV_Ffo
Connor discovering Turn Up the Speakers:
https://www.youtube.com/watch?v=YTSJtVo-BjQ
When Connor's love of Virus started:
https://www.youtube.com/watch?v=fDxouynUfqA

Friday, March 4, 2016

Connor met Hardwell!!!!

We still can't believe it!!  Connor got to meet Hardwell!

We found out last week Connor would be able to meet Robbert (Hardwell's real name) AND go on the Tour Bus.  Sometimes we aren't sure how much Connor understands but he not only understood but he was telling everyone about and was very excited!

On the way in to meet Robbert, Connor was playing his Hardwell playlist the entire time.  We were there very early and we weren't sure how Connor would deal with waiting.  Typically it's a very difficult thing for him but he was amazing!  He didn't want to take a break or anything, he just wanted to listen to Hardwell.  :)





Any time there was a truck or an MBTA bus he kept asking if it was him!  This is when he saw the bus . . he almost hopped out in traffic!



When we got on the bus, Connor was in awe!  He couldn't get over how awesome the bus was.  Robbert even gave him a tour so he could check it out.

Connor talked about the songs he liked and gave everyone a Connor's Crusaders bracelet (which they all put on including Thomas Newson and Kill The Buzz (Adithya Nanuru)). They gave Connor an amazing poster that they all signed and Robbert signed Connor's "I Am Hardwell" DVD.  Connor shows Robbert his Hardwell braclet too!

We spent some time on questions he wanted to ask Robbert (he needed some reminders) but he kept asking about his dog, Jager.  Robbert was so nice!  He even FaceTimed with her so Connor could see her playing.  Connor LOVED it!