Connor met STEVE AOKI!!! With pics and videos :)

Photo credit Cesar Sebastian

For a long time, Connor's favorite music has been EMD/Dance.  He loves the beat and fast tempo and the fact that he can move and dance to the music  despite his Duchenne Muscular Dystrophy.  Steve Aoki's music has been his favorite for equally long.  Connor got to meet him November 15th!  Steve was warm and caring with Connor and they even pretended to be in a Tornado together.  Connor loved every minute of it and it was truly a priceless experience!  Thank you so much Steve for a truly beautiful memory Connor will have forever!  We are forever grateful!
Kira and Jon

The evening started with Sandra from Foxwoods escorting Connor, Jamie (Connor's Aide) and me backstage to Steve's dressing room.  Sandra was wonderful with Connor even pretending with him in the elevator.  When we got to the stage there was a loud generator blowing up rafts.  Connor was scared and unsure of going by it so the guy turned it off so Connor would be okay.  This was just the first clue of what an incredible experience this was going to be.

Photo credit Cesar Sebastian

When we got to Steve's dressing room, Steve greeted Connor with a giant "Hi Connor!"  And Connor had the biggest smile I have ever seen and said "STEVE!"  It was the best moment on earth for him!  Steve started singing Connor's favorite song "Boneless" and Connor wanted to dance, but he also wanted Jamie to hold him.  Connor did get down and dance a bit with Steve Aoki--it was truly amazing!  They talked about their favorite songs (Connor changed him mind that day and said Tornado as his favorite) and Connor gave Steve a birthday card.  Steve really appreciated it and even told Connor it was the first birthday present that he'd gotten.  Steve loved stick figure Steve from the card and could tell it was him.  Connor was beyong thrilled.  They also discussed the other drawings on the card.

Photo credit Cesar Sebastian

Connor relaxed while we spent time with Steve.  An incredible ice breaker was Steve watching Connor dance to his song on YouTube.  Connor kept commenting on the video and described all sorts of things about it including his brothers and sister in the video.

For some reason we wound up on the floor and in the doorway but Connor seemed to be comfortable there so we didn't dare move since he was having such a wonderful time.  And the awesomeness continued!  Steve and Connor pretended they were in a tornado and Connor just loved it.  Then Connor turned the floor into a black hole and told us some cool stuff about that.

Photo credit Jamie Carreau

And then more amazing things happened!  Steve started calling so many of his friends and Connor got to talk to DeadMau5 on FaceTime (this is Connor's second favorite artist).  Connor was a tad confused because he's used to seeing DeadMou5 with his Mouse head on.  Steve and Connor were even taking Selfies and texting the photo to his friends including Tiesto (Steve did that song with him for Tornado) when Steve couldn't reach them.

Steve and Connor hung out on the couch too while Steve signed some things for us.  Connor wanted to sign some things too and took the same notebook (as Jamie and I hyperventilated) and started drawing.  Connor was even signing his name too--it was so cute!  Steve even call his girlfriend and Connor got to talk to her even pronouncing her name correctly.  Fun fact--Steve and Connor are both lefties!

Photo credit Cesar Sebastian

As we were getting ready to leave Steve offered Connor some fruit (Connor's favorite).  Connor chose an orange and Steve even offered to peel it for him!  Jamie and I peeled it while Connor and Steve just hung out talking about what they liked.  Connor finished the orange and it was time to go.  I could tell Connor was sad but he was tired too.  We took a few more photos and then off we went.  Of course on the way out Connor heard "Bad" by David Guetta (still have no idea how he heard it since it was so loud there) and had to dance to it despite being tired.  Dancing is what motivates Connor and we love watching every minute of it!

Maybe Connor will see Steve in the NeonFuture!

For more information about what we are currently trying to do for Connor (home modifications) you can visit GoFundMe:  http://www.gofundme.com/drp2yw

Windham Family Looking for Community Support

The Mullaly family of Windham has been blessed with a beautiful family and strives to lead a fulfilling life enjoying all the activities a family of four children can.  They take everyday challenges and obstacles and work through them.

A medical issue has arisen and they are looking for community support.  After a visit for the nursing services they explained that their son, Connor, 6, who has Duchenne Muscular Dystrophy and Autism, is growing up and becoming too heavy for them to carry up and down stairs.

Unfortunately, their home is two levels and his bedroom that he shares with his brothers is upstairs.  The bathtub is also upstairs, which means that not only the nurses have to carry him, mom and dad have to carry him downstairs for meals and upstairs for bed.  As he continues to grow this is becoming more difficult.  While Connor still has some mobility going up and down stairs, mom, Kira, said, "We have been advised by Doctors to avoid stairs to prevent additional muscle damage so we have been carrying him.  So our options are to spend about $10,000 on a stair lift system (and have to modify our front door) or get his bedroom to the main floor which is what we were planning to eventually do anyway since a wheelchair wouldn't be able to fit upstairs."  Due to his growth spurt and medical devices he will eventually need, the time has become critical.

Although they have looked into grant funding to have this project completed, Kira said, "We have been shocked at the cost and the lack of grant funding for something like this.  Before we can even request state funding for handicapped accessibility, we need the room he will be living in, built."  They have friends that are willing to do the work, but the cost of the materials is an issue.  If anyone in the community, or outside the community, is able and willing to discount concrete, wood, siding, roof, garage door, etc, they would appreciate your help.  They have also been doing fundraisers, but as Kira said, "We desperately need the materials to start his bedroom now."

You can reach Kira at kmullaly@gmail.com - Monetary donations are also being accepted.

At the Common Man Breakfast that assists with MD are the Mullaly children.  Keely, 3, Declan, 5, Liam, 8, and Connor, 6 with DMD.  Connor is 6 and he has a smile that lights up the room along with many priceless facial expressions.  What he loves most in the world is music and dancing despite his disabilities.
Story/Mary Ann Horaj

From the Windham Independent November 13, 2014

To donate via Go Fund Me:  http://www.gofundme.com/drp2yw

Connor Met STEVE AOKI!!!!

For a long time, Connor's favorite music has been EMD/Dance.  He loves the beat and fast tempo and the fact that he can move and dance to the music.  Steve Aoki's music has been his favorite for equally long.  Last night Connor got to meet him!  Steve was warm and caring with Connor.  He was genuinely interested in him!  I will post pics soon with the full story!
Thank you so much Steve for a truly beautiful memory he will have forever!  Thank you so very very much!  We are forever grateful!
Kira

For more information about what we are currently trying to do for Connor (home modifications) you can visit:  http://www.gofundme.com/drp2yw

Join us for the First Annual Connor's Crusaders Golf Classic

First Annual Connor's Crusaders Golf Classic

Monday, September 22^nd 2014 at 8:30 AM

Hillview Country Club

149 North Street

North Reading, MA 01864

Join us for the First Annual Connor's Crusaders Golf Classic! Connor has Duchenne Muscular Dystrophy and Autism.  Duchenne will put this lively six 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.

  

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

• The Course Fees
• Golf Cart Rental
• Buffet Dinner

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.  To pay by Paypal, please click the Donate button.

      

Contests include:

Longest Drive

Closest to the Pin

Putting Contest   

There will be some amazing raffle prizes as well!

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

Please note that we are not a non-profit and the donation is not tax deductible.  We are simply a family that is trying to raise money to defray medical costs.

Cincinnati or bust!

So we finally got insurance approval for going to Cincinnati!  Thankfully we were able to reschedule for September (which is actually pretty shocking).  This is such a huge relief and we are very grateful to our Pediatrician's Office for sending out the 50 page fax for the appeal.  And that it was enough for them to approve the appeal.  So very grateful!

A few people have asked "Why Cincinnati" and I wanted to answer.  Not only is Connor going to get checked out head to toe for Duchenne Muscular Dystrophy (and evaluated on how the Deflazacort is working which we are slightly concerned because all his veins are popping out now and he's been on it a year) but he is also getting a Cardiac MRI.  This is important to us because we need a baseline to see if there has been any fibrosis in his heart yet.  After this one, it will be every 2 years.

Cincinnati Children's Hospital takes a multidisciplinary approach.  He sees up to 10 Doctors in 2 days but his primary Doctor there is Dr. Wong.  She is a Neurologist and expert in DMD.  She knows the latest trials, articles, etc.  The MDA clinic at Dartmouth Hitchcock didn't know anything and had a "wait and see" approach.  That is just plain unacceptable (I will say that there have been many people who have said their MDA clinic is amazing.  This one just isn't.).  He also has a TON of diagnostic testes like bone density, blood, liver, etc.  They truly know what to evaluate.

Obviously Connor is still very mobile and LOVES to dance.  Some things we have noticed more recently where he has more difficulty getting up from the floor and he seems to have more muscle soreness.  The incredible thing is that he's able to tell us!  The Applied Behavior Analysis therapy he has been getting since his Autism diagnosis has been wonderful.  We went from uncontrollable meltdowns with seemingly no trigger to be able to see when he's getting overwhelmed.  This summer was the first time that we weren't entirely home bound because of his unpredictability (providing we have a 1 to 1 adult to child ratio).  :)

We also need to thank endlessly a generous anonymous donor for paying for our hotel for the trip for Connor to Cincinnati.  It is just truly amazing.  We will do updates during the trip but hope (and expect) it to be pretty standard.

Third Annual Connor's Crusaders Hockey Game

The Third Annual Connor's Crusaders Hockey Game was a success!  First Jon triumphantly blocked quite a few shots at him from his teammates.  The event proved to be a little too much for Connor who decided to take a nap on Kira for the first and second periods.  We think he was just a little overstimulated but no meltdown so that was an absolute plus!  Connor's brother Liam dopped the puck for the second period but Connor dropped the puck for the third period.  Connor was really enjoying himself for the second and third periods.  He just needed that break.  :)

We have to say a huge thank you to all who donated items for the raffles.  And thank you to the DJ Tim Markland and Brian Gonsalves for organizing the event.  Thank you!  Thank you to all the players, referees, and the incredible donations.  All the baskets were just amazing!

We also want to doubly thank all of you for your support for a very difficult time.  Kira getting laid off and loosing the family dog in the same week as the hockey game made for a very very emotional week.  As overwhelming as it was, we know we will make it through.

Connor has a busy schedule coming up as he goes into Kindergarten in the fall.  With all his support people including his school (SAU-28), ABA therapy, Speech, Ocupational Therapy, and Hydrotherapy we are seeing improvements.  It's slow (and painful at times) but he's able to communicate more effectively which helps us feel like all this has GOT to be helping him.

We are understanding more and more about Autism and how to read Connor when he's approaching a difficult point. It's almost like learning another language.

June is Duchenne Muscular Dystrophy awareness month.  We SO VERY much appreciate those of you that chose to post something about Duchenne.  It's such an unknown disease that we feel like it's our job to educate and with education and awareness, more is possible.

To see a video of Connor with the microphone, login to facebook (and be my friend) and you can see it from May 18th:  https://www.facebook.com/#!/photo.php?v=10201292644543924

 

Thank you all from the bottom of our hearts!

Jon, Kira, Liam, Connor, Declan and Keely

Windham boy battling Duchenne's and How you can help

Connor Mullaly, 5, was diagnosed with Duchenne Muscular Dystrophy (DMD) 2 1/2 years ago.  At the time, mom, Kira was pregnant with their daughter, Keely, the family had just celebrated their son Declan's first birthday and Kira said, "This was on the heels of my husband Jon's testicular cancer as well.  Talk about a stressful time."  In July 2012, Connor was also diagnosed with Pervasive Developmental Disorder (Autism Spectrum).

Duchenne Muscular Dystrophy is genetic, degenerative muscle-wasting disease that not only affects the major muscles of the body but the heart muscle also.  It is predominately a male disease and boys generally end up in a wheelchair between 10-12 years of age.  The life expectancy is the mid-twenties.

Kira, said, "Connor is doing well thankfully (he can even still jump which some DMD boys can't do) and loves music.  His eyes light up and sparkle when music is on and he can move and dance."

While the family has to live with the devastating diagnosis, Kira said, "We are trying to focus on the here and how and what we can do to improve his life now."

There have been a number of behavioral challenges with Connor, but he is making remarkable progress.

Husband Jon's co-workers from Cataldo and Atlantic Ambulances and friends for the past 3 years, have planned a Hockey Ga

me benefit for Connor's Crusaders.  The event will be held on May 18th at the Burlington Ice Palace, Burlington, AM from 12:30 pm - 4:30 pm.

When Kira asked Connor if he remember going to the hockey game last year he was able to tell them a few things which she said , "is just unreal!"  Adding that he would never been able to communicate that last year.  For that and so much more she sent out a, "humongous thanks to all the wonderful ladies at SAU-28.  They have been working with Connor since he was 3 and now at 5, he will be going to Kindergarten in the fall.  It's exciting and sad at the same time because we have learned so much from these exceptional ladies and he loves all of them so much.  We have really been fortunate to have Marguerite (and Christine and pals) to help us with this 'complex fellow'.  We really can't say enough good things about them and their program."

While there are ups and downs the family members, who include brothers Liam 7; Declan 3 and Keely 2 make the best of each day.

For tickets for the Third Annual Connor's Crusaders Hockey Game, or questions, you can contact Kira.  Tickets are $20 each and there will be raffles including an autographed puck from Adam McQuaid, gaming console and more.

Thankful for the benefit, Kira said, "With support like this we are forever grateful and thankful to not be traveling down this road alone."

There is also a Special Needs Trust Fund established to help defray the cost of Connor's medical care, home modifications, van modifications, and education needs because of Duchenne Muscular Dystrophy and his Pervasive Developmental Disorder (Autism Spectrum).

Recent developments in Sarepta's Eteplirsen drug which is in clinical trial, has the family excited and optimistic as this is something that might help stabilize a child with DMD.  It is awaiting FDA approval.

From Windham Independent published Thursday May 9, 2013.