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

Beer! The Crusader's Oktoberfest and Connor's Christmas Concoction

The beer is bottled!

Last week Jon and I brewed beer for Connor's Crusaders and we are bottling next week.  We had a great time (on this very belated 10 year wedding anniversary since May) and even designed our own labels.  Mine came out AWESOME!  The beer Jon chose to brew is Oktoberfest which is a classic stein filler for those looking for a bit more body and flavor (5.5% alcohol per volume).  I chose to brew Pilgrim's Christmas Ale which is a true holiday delight with all the spices of the season in a very hearty brew (7.5% alcohol per volume).

"The Crusader's Oktoberfest":  A good dose of malt, smooth medium body, and a subtle aroma of hops tie it together for this autumn German specialty.  Fill your stein with this one.

Connor's Christmas Concoction

"Connor's Christmas Concoction":  A Mayflower load of extracts and spices combine with a bountiful harvest of grains and hops to make a full bodied, slightly sweet, very spicy holiday brew with an impressive 7.5% alcohol.  Gather your neighbors and friends for this feast . . . they'll be very thankful.

These aren't traditional 6 packs but 22 ounce bottles.  We are giving each 22 ounce bottle for a $10 donation to Connor's Crusaders.  All proceeds will go to Connor's Crusaders Trust Fund to help defray Connor's medical costs.  This is a Trust Fund for Special Needs set up through a lawyer which can only be withdrawn from under very specific circumstances such as medical need, educational need, and van and home modifications to name a few.

Crusader's Oktoberfest

We are really excited about this and of course we are doing "virtual beers" for just donations.  You will get a picture of Connor and a thank you from him for these donations.  You can choose to donate through PayPal (link on the left) or check made out to Connor's Crusaders.  Thank you everyone who is interested!!!

Happy New Year!



Jon and Kira Mullaly

The only thing consistent are his inconsistencies . . .

Connor had a speech and language evaluation today.  We had been waiting for this appointment for 6 month or so and we were looking forward to getting some more answers to his communications issues.  Especially how to help him as we are equally frustrated as he is.  While I was describing the behavior issues that go along with his communication issues and his typical 20 times-a-day request to "eat something" and telling us "I can't talk", I was feeling like this is probably the 20th person that I was explaining Connor to and the Doctor recognized this.  It was refreshing and comforting that we got the recognition that we will not stop seeking help for Connor until we find SOMETHING, ANYTHING that will help him. 

Last night Jon and I discussed what questions we are looking for answers to and what we expect (realizing recently that I, in particular, may have expectations set a little too high usually) and how the Pervasive Developmental Delay has changed how we not only handle Connor but also how we now need to deal with the world.  Our family decisions as to what we do and not do are now centered around what he can "handle" yet we are still guessing since we are still learning and adapting to his needs and limits. 

Something as simple as going to a Tree Lighting in our town, which we were looking forward to as a new family tradition and thought we made all arrangements (napping him and carrying him around so as fatigue was not an issue) became too much for him and we were not prepared for that.  He was not able to tell us what to do that would help him.  We couldn't anticipate that he would be sensory overloaded.  Equally for his brother's birthday party, Connor was not able to even be with the other kids for unwrapping gifts since he had zero self control and wouldn't stop streaming and hitting.  We thought we had prepared him for this event as well explaining repeatedly that this is Declan's party, presents, etc. and what was coming next but this too proved to be too overwhelming for him yet he was not able to tell us how to help him.

So suffice to say I had a lot of eggs in the Speech and Language Evaluation basket since communication seems to be such an issue.  What I learned was that he knows what a taxi and a candle are (believe me, this is big!) but when he tries to put all the words together (grammar, etc.), he has lots of trouble.  And than frustration comes out physically.  For a kid that has no self regulation, this is a huge problem.  So this was a really good appointment explaining where his deficits are and where to work on his skills, but we have a very long road ahead.  We just hope that EVERYTHING becomes easier for him (and for us too).

We are starting ABA therapy (Behavior therapy) in January in our house which we hope will help teach him some better coping mechanisms and strategies.  Amazingly Connor has joined us for dinner for nearly two weeks which has been wonderful.  The last few days he has been telling everyone including siblings, "I like you" which is just so sweet!  We are looking forward to Christmas and attempting to put some things in place which we hope help him cope better with a very exciting day.  Thank you all for your continued support and have a Merry Christmas!  Happy New Year! 

All our love,
Jon, Kira, Liam, Connor, Declan, Keely and Guinness

Two years since DMD . . . are we "normal" yet?

It's been two years today since Connor's confirmed Duchenne Muscular Dystrophy diagnosis.  It has also been three months since his PDD (Autism diagnosis).  There has been good with the bad.  We were able to see Dr. Wong in Cincinnati in September who said that Connor is doing great with Duchenne and "he may be on the milder side of the disease" which was so amazing to hear.  We certainly hope that it does wind up being the case.  It gave us validation that the endless hours of research on Duchenne and what Connor needs is helping!  It took quite a lot to be able to go, not only financially but family-wise.  Thank you Dawn, Kris, Fiona, Sam and Mom.  Watching three of our kids plus a dog is not an easy task.  Kuddos to you.  Do we have a "date" again next year?

To those of you that know of our flight woes at the last minute to get to Cincinnati, Jon and I have decided to not take from Connor's Special Needs Trust Fund.  Instead Jon is working as many overtime shifts as is humanly possible to make up for the cost (going from little sleep to zero sleep).  We just felt that when the time comes for van and home modifications, it was more important having those additional funds then.

This week there was an incredible breakthrough for a potential drug that Connor may be able to get in the future (video:  http://video.cnbc.com/gallery/?video=3000119969&play=1).  It is the equivalent of discovering electricity quite honestly for Duchenne.  Although this "batch" is not for Connor, he would be the next group.  We are hopeful that in the coming years they get a version to help Connor.  For now, we hopefully wait and start considering what Connor may want for Make-A-Wish.

Connor started life-long use of corticosteroids five months ago.  It was rocky at first but it has given him more energy.  The biggest issue for us now is Connor's behavior which we are still working on.  With the PDD diagnosis we have been trying to get additional therapy for him and are finally in the later stages of that process.  Everything takes time.  We are also in the process of medicating him to help with his "rigid" thoughts.  Whatever will keep him from hurting Keely for no good reason is fine with us.

So now two years later I think we are all in a better place.  We are thinking about fundraising ideas locally but haven't made any progress.  For now, if anyone would like to donate to Connor's Special Needs Trust Fund, you can do it through paypal here by clicking on the Donate button on the left.

Thank you everyone for your love and support.  We have been so grateful for the friends and family that have really helped us get through a very difficult time in our lives.  We have even been shocked by donations from people we don't even know.  To all of the supportive people in our lives, we are eternally grateful.

Jon, Kira, Liam, Connor, Declan, and Keely

Event Raises Muscular Dystrophy Awareness

From the Windham Patch:  http://windham.patch.com/articles/neighborhood-event-raises-muscular-dystrophy-awareness

An annual fun run took place on Clarke Farm and Buckhide Road.

June 1, 2012

From Emily Bristol Sinopoli
On Sunday, May 27th, the Clarke Farm/ Buckhide Road neighborhood, held their annual Neighborhood Fun Run! Every year children from the neighborhood gather to run a half mile, mile, or 1.5 mile race together to honor a local child and raise awareness regarding a special need. This year’s event honored not one, but three very special young people who have Duchenne Muscular Dystrophy. The three honorees at this year’s event were Connor Mullaly (4) of Windham and Ben Safford (16) and Sam Safford (14) of Pelham formerly of Windham.
All three boys were at the event and took part in the half mile race. Young Connor did a portion of the race with the assistance of teenager Ben and his power wheel chair. For the remainder of the fun run, Connor ran with the encouragement of Ben and Sam's younger sister, 13 year old Lydia.
Thank you to the many families who participated in the event and made it a success. Duchenne Muscular Dystrophy (DMD) is the most common childhood form of Muscular Dystrophy. Duchenne most often strikes boys. It is very rarely found in girls. DMD is progressive and can be inherited from the mother (as is the case with the Safford family). Or, the genetic defect can be spontaneous in the child (As is the case with the Mullaly family). Duchenne is typically diagnosed between the ages of 2 and 8. Muscle weakness begins in the legs and arms, and progresses over time to the point where power wheelchairs become necessary by age 12, and often earlier.
Teenagers with Duchenne often need tendon releases and scoliosis surgery. Because the heart and lungs are muscles too, people with DMD eventually lose their lives due to respiratory or cardiac failure in their late teens or early twenties. We ask for help to find a cure for this fatal, debilitating disease!
To learn more about Muscular Dystrophy and to support families like the Saffords and Mullalys, you can purchase a book entitled Saving Our Sons and Daughters II in which both families have been profiled. The book was written and compiled from the combined experiences of over 40 families including young people who have the disease, their parents and grandparents. Saving Our Sons and Daughters II can be purchased directly from Lori Safford and Kira Mullaly. You may email either of them at lorisafford@comcast.net or kmullaly@gmail.com.
You can also make a tax deductible donation to help fund Duchenne MD research by donating to the Jett Foundation through Lori Safford who is competing in a triathlon this summer in honor of both her sons. This is an annual fundraising event for her! Last year, Lori's team, "Gals for Cal" raised $43,000, and over the past 3 years they've raised nearly $100,000 to fund Duchenne research! They're hoping to exceed that amount this year and they need YOUR help to do so. If interested, visit: http://jettfoundation.donorpages.com/GalsforCal/lorisafford/.

The starting line.Credit Emily Bristol Sinopoli

And they are off!Credit Emily Bristol Sinopoli

The Race Honorees taking off: (L-R) Sam Safford, Ben Safford and Connor Mullaly (riding on the back of Ben’s power wheelchair).Credit Emily Bristol Sinopoli

6-year-old Liam Mullaly was one of only two kids who completed the 1.5 mile course! He finished with a time of 15:40.Credit Emily Bristol Sinopoli

Honoree, 4-year-old Connor Mullaly, finishes the half mile race with the encouragement of Lydia Safford. (Background: Connor’s 2-year-old brother Declan also completed the race, running with Emily Sinopoli.)Credit Emily Bristol Sinopoli

Wanda Carter places a medal around Connor’s neck at the awards ceremony while proud family and friends look on.Credit Emily Bristol Sinopoli