‘…Guard me Jesus through the night, and wake me with the morning light’
By Doug Robinson
As he waves from the first-floor living room window of his Windham home, Connor Mullaly, 6, looks like any other young boy who has his whole life ahead of him. Waving, and smiling, with a
.JPG) |
Connor waves from his living room
window, as his parents remain in the
background wondering if help will be
coming sooner than later.
Staff photos by Doug Robinson |
face full of hope and cheer, he peers sweetly out through the glass. He loves to sign, dance and he loves to hug. His smile gets even big
ger when he hugs.
Yet, after walking up the 26 steps to Connor’s bedroom, anyone easily can see that the upcoming challenges Connor faces are not typical. In fact, these new challenges are devastating.
The new wheelchair that will be coming soon will not fit up those 26 steps. The stairs are too narrow. No ramp can accommodate that ride for Connor because the front door is too narrow, and there are three turns to make in the hallway. And, neither can an assisted chairlift raise that bundle of joy to the highest floor. The stairway space is too narrow for that too. And to make matters worse, the living quarters for the Mullaly family requires walking up seven steps to enter their Garrison-style home.
A short while ago, one person could easily carry Connor up those stairs. It was a great ride because Connor would wrap his arms, hug and squeeze really tight, nuzzling all the way. His hugs are a gift.
But he is a growing boy. Today, Connor weights nearly 40 pounds, and the medical personnel who assist the Mullaly family has told them they are not allowed to carry an individual that weighs more than 40 pounds. Bags of wheat, rice, dog food and even a five-gallon bucket of water weigh about 40 pounds. Yet, the medical caregivers cannot carry a young child. Liability is the reason. What would you do?
So, each day, seven days a week, mom, dad, family members and volunteers all attempt to make life as normal as possible for little Connor. He constantly has assistance at home, school, and when he can play.
Connor has a disease known as Duchenne Muscular Dystrophy. One in 3,600 boys us affected by the genetic mutation. Mom and Dad will face the unimaginable.
And Connor’s condition continues to worsen. Diagnosed only four short years ago with Duchenne’s, he now begins to suffer further complications from Autism. He is beginning to have difficultly retrieving words and becomes compulsive at times. “We guess a lot and he is beginning to become upset when we do not know what he wants,” explained his mom, Kira.
“I am most afraid of the complications created by the steroids that Connor is required to take daily. The lifelong steroid weakens his immune system which causes him to get sick quicker and pneumonia is a concern. This concern grows as he grows too. Eventually, his condition will require a breathing machine brought into the house to make sure that we can keep him breathing.
It was only nine years ago that the Mullaly’s considered their residence a dream home. “We have thought about selling the house, but this is our home. Our children love it here. We have out Christmas’s here and we have our kids’ birthday’s here. We need help.”
The family’s medical bills have continued to grow. “Friends and family have volunteered to help build us a garage next to our house,” Kira continued. “However, with the expenses of the medical treatments, we are strapped.
“We need to protect Connor and we need to provide him with the opportunity to have access and egress from our home comfortably. There is no way a wheelchair can be carried up 26 stairs to the third floor. With this proposed garage, we will have the ability to set up a room above the garage for Connor. We will install an elevator for him to use which will lift him to his new bedroom. Also, we will have built an ADA-accessible bathroom adjacent to the bedroom for Connor to use. Pretty soon, we will be carrying him there too.”
Trial medications for Duchenne’s are years away. Medical bills rise while mom and dad continue to cope anddo the best they can for their child. They are just trying to get through each day and make their child as comfortable as possible while he fights a fight that he never wanted for asked for.
 |
The proposed garage will be built surrounding the family's
vehicles. The garage will have an elevator which
will carry Connor to his bedroom, to be re-located
to the first floor.
Staff photos Doug Robinson |
And, when Connor goes to bed each night, posts on his wall is a poem so rich in blessing. It simply says, “Now I lay me down to sleep, I pray the Lord my soul to keep. Guard me Jesus through
the night, and wake me with the morning light.”
The cost of the house project has been estimated at $100,000. “We have lots of friend who are willing the help. We have had architectural plans donated and the town tells us we are good to go. All we need is the supplies. Maybe we could have an old Amish house raising. Wouldn’t that be cool?”
In the meantime, the Mullaly family waits. They wait daily, hoping that another shoe does not drop on their fragile world. “Please help” . . . . Guard me Jesus through the night, and wake me with the morning light.”
For those wishing to make a donation, a trust fund has been established: Connor’s Crusaders Special Needs Trust Fund, c/o Digital Federal Credit Union, 257 Lowell Rd., Hudson, NH 03051.
For those wanting to donate materials, equiptment, or professional services (electrical, plumbing, heating, roofing, foundation), email Kira at: kmullaly@gmail.com.
Link to article:
http://goo.gl/KTB351
We have been waiting for this day for a long time and it's both exciting and terrifying! We are breaking ground for creating Connor's bedroom (on the first floor). We will see how far we get and crossing our fingers we are able to get to a point where it will survive the Winter. All the kids are super excited at all the equipment and digging. Especially Declan who just wants to jump in and help with his mini truck. This morning Connor said he was excited because he'd be closer to the swing set. LOL
This project is going to take a while and we have so many people to thank for getting us to this point I don't even know where to begin. Please wish us luck for a smooth construction project. 
