Connor's Crusaders
Donation protected
MEET CONNOR MULLALY. On October 6th Connor had his 9 year diagnosis anniversary for Duchenne Muscular Dystrophy and is currently in the diseases sharpest physical decline phase.
My name is Dawn Fitzpatrick, a local interior designer employed by Messina's flooring. I had the unique honor of meeting the Mullaly family last month to try and assist in the design and finishes of an accessible bath and living space for Connor. This positive and unassuming family left a mark on me that day that I can't forget. After my initial meeting with the Mullalys, I decided to look a little deeper into their story and it broke my heart. I decided that it is crucial to share their story with as many people from their community as possible.
When Connor was 3 years old he was diagnosed with Duchenne Muscular Dystrophy. That was the day that Duchenne entered the Mullalys' lives and then came the additional autism diagnosis approximately one year later. Duchenne Muscular Dystrophy (DMD) is a degenerative muscle wasting disease and is fatal. As Connor's mobility declined, medical bills stretched into the tens of thousands of dollars and continue to increase year after year. The disease has since put Connor into a part time wheelchair. Typically, boys with DMD lose their ability to walk between the ages of ten and fourteen becoming completely wheelchair dependent. By their late teens, young men lose the strength in their upper bodies, including the ability to move their arms. In their twenties, the disease is fatal.
In an effort to accommodate their son's impending immobility, Kira and John Mullaly have partially completed an accessible addition to their home with the help of local community and charity events hosted by friends and family. However, after learning that available state funding only covers half the price of a lift from the garage to Connor's new bedroom, the family is again on their own for the majority of the payments. The Mullaly family has been fundraising and preparing for and accessible home since Connor was diagnosed. Connor's siblings, Liam, Declan and Keely show their unconditional love and support by participating in local fundraising events for the disease. "If anything, this is teaching them additional compassion. They have to understand that our family is different." Kira Said " ...we hope that it's helping them become better human beings, that they're going to be more understanding of differences with other kids.
Now that Connor is in a wheelchair, the finish construction in his space is crucial. As Kira explains "Currently, we are carrying Connor up and down the stairs to the bedroom he shares with his two brothers. In time, Connor won't be able to turn himself in his bed so we will need to do that for him as his physical needs increase. Also during their teenage years, young men with Duchenne usually need help with breathing at night, which will necessitate having a bipap machine placed in his room. Over time, as his respiratory system weakens, Connor will require 24 hour a day support. This uncertain time makes it even more important to have our home accessible. Now at 70lbs carrying him is getting increasingly difficult (and dangerous). Especially with the colder weather and more slippery conditions coming. we would like to get a way to get him into his new bedroom (and into the house) done soon. We have had a lot of help along the way for this project but the reality is we are short on funding."
The Mullaly family is so very close to completing the crucial space for Connor. Funds are needed to complete the elevator lift and get heat into the space so the family can have floor and shower finishes completed. This family has tireless saved funds to chip away at the progress of the addition over 9 years and they need our help. Any amount at this point will help get Connor's Space complete so he can move into an environment that is emergently needed.
"Though there are trials and tribulations, they always lean on each other, Kira said, and try to see the good in everything.
"Yes, we always try to look at the positive even thought it can be incredibly hard sometimes." Jon added. "It is every parent's fear that they're going to have to bury a child. We know Connor is going to die, and we know that there is no cure for him. It's purely a fatal disease. We want to make sure that each one of his categories, jobs, tasks, gets completed in the short amount of time he gets."
I promise you that this family truly appreciates any help you can give. Please spread Connor's story and help in the Crusade to move this amazing child into the space he so deserves!!! Let's show the Mullaly Family the good this community has behind it! Thank you so much for you time and consideration.
My name is Dawn Fitzpatrick, a local interior designer employed by Messina's flooring. I had the unique honor of meeting the Mullaly family last month to try and assist in the design and finishes of an accessible bath and living space for Connor. This positive and unassuming family left a mark on me that day that I can't forget. After my initial meeting with the Mullalys, I decided to look a little deeper into their story and it broke my heart. I decided that it is crucial to share their story with as many people from their community as possible.
When Connor was 3 years old he was diagnosed with Duchenne Muscular Dystrophy. That was the day that Duchenne entered the Mullalys' lives and then came the additional autism diagnosis approximately one year later. Duchenne Muscular Dystrophy (DMD) is a degenerative muscle wasting disease and is fatal. As Connor's mobility declined, medical bills stretched into the tens of thousands of dollars and continue to increase year after year. The disease has since put Connor into a part time wheelchair. Typically, boys with DMD lose their ability to walk between the ages of ten and fourteen becoming completely wheelchair dependent. By their late teens, young men lose the strength in their upper bodies, including the ability to move their arms. In their twenties, the disease is fatal.
In an effort to accommodate their son's impending immobility, Kira and John Mullaly have partially completed an accessible addition to their home with the help of local community and charity events hosted by friends and family. However, after learning that available state funding only covers half the price of a lift from the garage to Connor's new bedroom, the family is again on their own for the majority of the payments. The Mullaly family has been fundraising and preparing for and accessible home since Connor was diagnosed. Connor's siblings, Liam, Declan and Keely show their unconditional love and support by participating in local fundraising events for the disease. "If anything, this is teaching them additional compassion. They have to understand that our family is different." Kira Said " ...we hope that it's helping them become better human beings, that they're going to be more understanding of differences with other kids.
Now that Connor is in a wheelchair, the finish construction in his space is crucial. As Kira explains "Currently, we are carrying Connor up and down the stairs to the bedroom he shares with his two brothers. In time, Connor won't be able to turn himself in his bed so we will need to do that for him as his physical needs increase. Also during their teenage years, young men with Duchenne usually need help with breathing at night, which will necessitate having a bipap machine placed in his room. Over time, as his respiratory system weakens, Connor will require 24 hour a day support. This uncertain time makes it even more important to have our home accessible. Now at 70lbs carrying him is getting increasingly difficult (and dangerous). Especially with the colder weather and more slippery conditions coming. we would like to get a way to get him into his new bedroom (and into the house) done soon. We have had a lot of help along the way for this project but the reality is we are short on funding."
The Mullaly family is so very close to completing the crucial space for Connor. Funds are needed to complete the elevator lift and get heat into the space so the family can have floor and shower finishes completed. This family has tireless saved funds to chip away at the progress of the addition over 9 years and they need our help. Any amount at this point will help get Connor's Space complete so he can move into an environment that is emergently needed.
"Though there are trials and tribulations, they always lean on each other, Kira said, and try to see the good in everything.
"Yes, we always try to look at the positive even thought it can be incredibly hard sometimes." Jon added. "It is every parent's fear that they're going to have to bury a child. We know Connor is going to die, and we know that there is no cure for him. It's purely a fatal disease. We want to make sure that each one of his categories, jobs, tasks, gets completed in the short amount of time he gets."
I promise you that this family truly appreciates any help you can give. Please spread Connor's story and help in the Crusade to move this amazing child into the space he so deserves!!! Let's show the Mullaly Family the good this community has behind it! Thank you so much for you time and consideration.
Organizer and beneficiary
Dawn FitzPatrick
Organizer
Salem, NH
Kira Mullaly
Beneficiary