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.