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.

Third Annual Connor's Crusaders Hockey Game Scheduled

Yippee!!  The Third Annual Connor's Crusaders Hockey Game has been scheduled!  It's May 18th at the Burlington Ice Palace, Burlington, MA 12:30 pm - 4:30 pm. Tickets are $20 each.  

We have some amazing prizes already lined up:

Autographed puck from Adam McQuaid
Signed jersey from Clay Buchholz
Booze Bucket
Beer Bucket
Keurig Coffee Basket
Gaming Console
Ladies Basket


This is the third year that Jon, his co-workers and friends have planned a benefit for Connor's Crusaders.  With support like this we are forever grateful and thankful to not be traveling down this road alone.  

Connor's Crusaders are not only all the people involved in helping Connor but also a Special Needs Trust Fund.  This Fund helps defray the cost of Connor's medical care, home modifications, van modifications, and education needs because of Duchenne Muscular Dystrophy and Pervasive Developmental Disorder (Autism Spectrum).

For ticket sales and benefit information, please contact Jon or Kira Mullaly.  

More information to follow.  All our love and thanks!

Jon and Kira Mullaly