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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!


Thursday, January 12, 2017

Connor got to meet the Chainsmokers and got to stay for the show!!

We cannot believe this happened!  The Chainsmokers were playing in Boston at the AMP103.3 Electric Bounce House at the House of Blues and I took a shot at contacting them to see if they would meet Connor.  Selfie has been a long time favorite of his among many of their other songs.  I immediately got a (super sweet) reply and Connor was invited to the show!  I explained that he's 8 and underage and most places are pretty strict so we'd love if Alex and Drew could meet Connor even if it was at the airport and they told me they would get back to me.

After a little back and forth we had plans and times!  We ate close by and Connor kept asking if it was time.  He was so excited!

Look at Connor's HUGE smile!

Connor made two cards.  A Happy Birthday card for Drew since his birthday was coming up and a card for Alex thanking him for meeting him and letting him come to the show.  Connor drew Cheddar (Alex's dog) on the front.  They really seemed to love the cards!  Little did we know they snapchatted a picture of Connor (and his card)!

 

Connor got to ask them some questions which included favorite drink.  Drew said raspberry iced tea (PG variety).  Drew asked Connor what his favorite was and of course Connor said raspberry iced tea.  Connor asked a few more questions about favorite school subject but it was obvious Connor was just too excited!  He even forgot where he was from.  Alex asked if he was from Boston and Connor sorta said yes.  Alex tried asking Connor some questions but Connor got a tad shy so we helped a little.  He also also kept wanting to sit down in his chair.  Connor was VERY excited about the show!

We had brought a bunch of pictures for Connor to choose to ask Alex and Drew to sign and Drew grabbed the stack and said they would sign all of them!  Incredible!
Jamie and Connor!

Alex and Drew were so nice to Connor!  Connor genuinely LOVED meeting them.

15 minutes before the Chainsmokers!  #Selfie


When the Chainsmokers came out!  I *think* Connor was excited!  (some swearing)


He was dancing the whole night!


And of course don't forget Roses!

Connor also loved that he got to see Cash Cash before the Chainsmokers came out.  He loves them too!

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