Today is THE DAY!!

We have been waiting for this day for a long time and it's both exciting and terrifying!  We are breaking ground for creating Connor's bedroom (on the first floor).  We will see how far we get and crossing our fingers we are able to get to a point where it will survive the Winter.  All the kids are super excited at all the equipment and digging.  Especially Declan who just wants to jump in and help with his mini truck.  This morning Connor said he was excited because he'd be closer to the swing set.  LOL

This project is going to take a while and we have so many people to thank for getting us to this point I don't even know where to begin.  Please wish us luck for a smooth construction project.

All our love and thanks!

The Mullaly Family

Keely "helping"?

Connor met TIESTO!!!!

Connor got his High Hopes Foundation music experience!  

We were so thrilled that Tijs (pronounced Dice with a T) was able to meet all of us but especially Connor.  Connor was so quiet we think he was star struck!  Tijs was super nice and his team even asked us what Tijs could ask Connor to engage him (amazing!).  Not many people ask that so it meant the world to us!  Connor chatted a bit with Tijs and got the shirt he wore from his EDC Las Vegas show signed (gasp!) in front of him.  Connor loved it!  The next day we also got his headphones that Tijs signed from the show in Atlantic City!

Jon, Keely, Tijs, Connor, Kira, Declan and Liam (photo courtesy Jordan Loyd)

Keely, Declan, Tijs, Connor and Liam giving Tijs the card we made (photo courtesy Jordan Loyd)

Tijs and Connor (photo courtesy Jordan Loyd)

Tijs and Connor (photo courtesy Jordan Loyd)

We drove to Atlantic City where High Hopes paid for hotel rooms for us for 3 nights and spending money.  The kids were all super excited since this was the first real vacation we've been on.  Connor played his Tiesto play list almost the entire drive down.  

Look what Connor found!

Connor and all the kids were super
excited to stay in a hotel room!

We went to Storybook Land the next day for a few hours and then back to the hotel for dinner and bed.  The next morning was the day Connor had been waiting for (see photos above)!

Then after meeting Tijs we got ice cream and went to the beach.  :)

Now to just figure out a way for Connor to go to a concert or two before he's 21 . . .  :)

Connor's Crusaders Fundraiser

Join us for the Second Annual Connor's Crusaders Golf Classic! Connor has Duchenne Muscular Dystrophy and Autism.  Duchenne will put this lively seven year old in a wheelchair between 10 and 12 and will be fatal in his twenties. This event is to help defray Connor's medical costs and home and van modifications.

Monday, September 21^st 2015 at 8:00 AM

Hillview Country Club

149 North Street

North Reading, MA 01864

The cost to participate is $135 per person or ($540 for a foursome).  There is a cash bar for lunch and no alcohol is allowed on the course.  This includes:

• The Course Fees
• Golf Cart Rental
•   Buffet Lunch

Make checks out to Connor's Crusaders Golf Classic.  Deadline for payment of foursome is upon registration.  If you don't have a foursome please contact an organizer and we will put you with a remaining group.  There are no refunds issued.  For more information please visit:  http://connorscure.blogspot.com/

Lunch option only this year for $35 per person!  Lunch begins at 12:30.  Ask an organizer!

Chris Jenkins (Primary)	978-995-3309	brotherhoodlw@outlook.com
Bobby Whittredge	978-729-8940	rwhittredge87@yahoo.com
Cheryl Bartkiewicz	978-808-0193	cbart3333@gmail.com

Cincinnati . . . thank you!

Once again we are home from Cincinnati and seeing Dr. Wong and her amazing team.  Connor's decline last year was slight (it took him a second longer to do just about everything).

Connor tried to get off the
gurney after the last MRI.

Versed is a great help when
doing a cardiac MRI.

Connor did very well this year.  His time even improved from getting up off the floor!  His time declined for going down stairs unassisted and he seemed shaky doing one foot at a time on the stairs but he was able.  The most significant physical decline is between 6 and 9 so we feel like we are on borrowed time each time we go.  Dr. Wong told us 8 1/2 they tend to see more decline so we are a little more prepared for that next year.  He does have a slight sway back now too.

Connor did the cardiac MRI and there was no change from 2 years ago!!  Whoo hoo!  He was also much more pleasant waking up.

Connor doing the DEXA!

Connor was able to do the full body DEXA scan too!!!!  We have been trying to get him to complete it for two years but he was too scared.  This year we did a social story and showed him pictures of other boys doing it and he was able to complete it.  He even kissed the machine! He got lots of loot for doing all his hard work too.

Connor and his loot
after a long trip!

The good news is that we are on a list for Sarepta's control arm (natural history) for Eteplirsen when they start testing the kids.  And the better news is that it's in  Boston.  So we are crossing our fingers Connor "gets in" by meeting the criteria of the study.  His Autism complicates things but we hope it's not a barrier for cooperation for him to complete the testing.  Dr. Wong thought that he was doing so well he probably won't qualify because he would do better on the 6 minute walk test (a good problem to have) so he would test out of criteria.  We will see.

If all goes well and he meets the criteria, then Connor will be part of Sarepta's control arm until his compound for his exon deletion (SRP-4050) is available where he would switch to being "on drug"
(if he qualifies).  And we hope against hope that it's as effective as Eteplirsen and that it happens soon.

The quick version of explanation is seen here on Sarepta's website:   http://www.sarepta.com/our-pipeline.  Connor has deletions of 51-53 which means that he needs to have exon 50 skipped.  It is the 4th compound called SRP-4050.

Connor did so well on the plane too!  This was the first time we did the less expensive option of having layovers and he did great!

We also found out the day we were leaving that we had an anonymous donor who paid for our hotel!  We simply cannot believe the generosity of the people in our lives.  Whoever you are . . . thank you from the bottom of our heart!

Connor and his "puppy"
by his favorite hospital item:
a volcano!

Connor of course picked the largest "puppy" from the gift shop but he sure earned it!  See you again next year Cincinnati!

Connor is 7 today!

Today is Connor's 7th Birthday!  I can't believe that we are here.  Birthdays are exciting but also bittersweet.  With each added year we are reminded of how we have limited time with Connor.  These events are always shadowed by the reminder of DMD's fatal progression.

However we are fortunate and thankful Connor is doing well physically and is even doing well in school despite the occasional hiccup due to Autism.  He has improved tremendously in the last year.  We are so proud of him!  He is able to communicate more and more about his wants and needs and meltdowns are becoming rarer.

Connor still LOVES EDM (Electronic Dance Music) and Steve Aoki has continued to be his favorite DJ.  While he's listening to other artists he's commenting "Steve will like this."  Thankfully Steve is a super nice guy!

Connor will be receiving his music experience from the High Hopes Foundation soon and we are so excited for him to be making his own CD.  We simply can't wait for such an incredible experience.

We are also under way for making plans for building his bedroom and are crossing our fingers we will "break ground" in the Spring.  It's super scary and exciting!

This is Connor enjoying a wonderful gift from Annie's Angels while listening to Martin Garrix's song "Animals".  Also a long time favorite song.

Blessed Beyond Belief!

This year Christmas was a little different.

Connor at 6

We had started reaching out to our community for help in building Connor's room.  This came about because a few LNA (Licensed Nursing Aide) Agencies had told us carrying a 40 lbs. child up and down our stairs is a liability.  Connor's bedroom is upstairs as well as the tub.  We didn't realize that we would need to look into this so soon--Connor is only 6!  However we decided we should start because we really had no idea how long it would take.  We have been blown away by our community!  So many people have shown interest in "swinging a hammer" on Connor's behalf.

We have had people show up at our door with donations for Christmas, we had food donations so we were able to have a wonderful Christmas feast, and we had close friends organize a collection as their giving back for the season.  We have truly been amazed at the people who have wanted to help.

On top of this, Connor had a wonderful Christmas!  He truly enjoyed it which hasn't always been the case.  This time of year is always financially tight for us so to have some breathing room was incredible.

Around Christmas we also asked for Connor to be nominated for the Ellen Degeneres show for "Nominate a Deserving Person in Need".  So many of you that I emailed nominated Connor (I think about 20 within a few days).  We have yet to hear back from Ellen or her team but I was hoping we might now that it's after the holidays.  But we will see.

Our trouble is getting the materials for building a room.  We are starting again to get estimates on the raw materials and seeing how far we get.  We figure worst case is we just get the "shell," as we call it, done it would be a step in the right direction.  The shell would be the foundation, concrete, wood, siding, windows, garage doors and then worrying about the interior like the handicapped accessibility pieces like a roll in shower, sink, lift (elevator) in some time after we can fundraise longer.

Additionally the principal of Windham High School offered to do the Trans NH Bike Ride in honor of Connor this year.  It's a 3 day ride to benefit the MDA while educating people on what Muscular Dystrophy is. This is the iMovie that the High School played while Mr. Kaplan explained what the ride was about and about Connor.  It was a great experience for Connor to be there and was cheered!

Thank you all from the bottom of our hearts!
Jon and Kira Mullaly