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