 |
| Photo credit Cesar Sebastian |
APRIL GUILMET
Union Leader Correspondent
Published Nov 19, 2014 at 10:04 pm (Updated Nov 19, 2014)
WINDHAM — Six-year-old Connor Mullaly has faced many hurdles in his short life, but that hasn’t stopped him from swaying to his favorite tunes.
It is unclear what the future will bring — or how many dances remain — for the blue-eyed Golden Brook School first grader, who was diagnosed with Duchenne muscular dystrophy at age 3.
One thing is certain, however: Connor will soon need a new bedroom. As he continues to grow, it’s getting increasingly difficult for his parents, Kira Mullaly, a software engineer, and Jon Mullaly, a paramedic, to carry him up and down the stairs of their two-level home.
Duchenne muscular dystrophy (DMD) affects approximately one in 3,600 boys. The incurable genetic disorder causes progressive muscular degeneration, eventually leading to paralysis. The average life expectancy for DMD patients is around 25.
The Mullaly family, which includes siblings Liam, 8; Declan, 5; and Keely, 3; prefers to focus on the promise each new day brings.
The couple, originally from Massachusetts, moved to Windham nine years ago to raise their family.
Several years ago, when Connor was experiencing speech delays and other symptoms, his parents brought him to their pediatrician. After lab tests revealed muscle trauma, Connor was transported to Dartmouth Hitchcock, where neurological and genetic tests confirmed DMD.
Kira Mullaly described her son as a happy child, one who was excited about his hospital stay as it meant staying up past his normal bedtime.
“For us, the news came as a huge shock,” she said. “But in a way we’re luckier than a lot of families, since this condition often goes undiagnosed for a number of years.”
The next two years were rough on the Mullaly family, as Connor’s parents struggled with the realities of the diagnosis. The family later learned Connor also has autism, and the little boy currently receives daily occupational, speech and physical therapy. Nursing staff regularly visits their home to help the family care for Connor, who currently shares an upstairs bedroom with his two brothers.
“He’s about 40 pounds now and is getting to the point where he’s too heavy to be carried up and down the stairs,” Kira said. Connor doesn’t know he needs a new bedroom yet, but his parents are guessing he’ll be pretty excited about it.
Perhaps not as excited as he was last weekend, when he had the chance to meet one of his favorite musical performers, DJ Steve Aoki, following a performance in Connecticut.
“Connor loves the beat and the fast tempo of electronic and dance music,” Kira said. “We don’t know how long he’ll be able to dance for, as his body begins to fail. But dancing with his favorite DJ is something Connor won’t forget.”
While Connor is currently able to walk, doctors have advised having him avoid the stairs in hopes of preventing additional muscle damage. Kira Mullaly said the family is now facing the options of installing a $10,000 stair lift system or building an addition on their home.
Adding a stair lift would be a temporary — and expensive — solution, Kira said, since their home’s front door would need to be widened to accommodate a lift system and the upstairs hallways aren’t wide enough to accommodate the wheelchair Connor will eventually need.
While the family has researched their options for grant funding, Kira said they’re currently stuck between a rock and a hard place.
“We’ve been told we need to have Connor’s room built before we can even apply for state handicapped-accessibility funding,” she said.
Family friends have already offered to pitch in with construction efforts, but donations of cash and construction materials are needed to begin that process.
In late August, Jamie Carreau, a licensed nursing assistant who helps care for Connor, created an online fundraising page, Connors Crusaders, on the Go Fund Me website.
As of Wednesday, donations totaled $2,115, though the goal is to raise $100,000.
Carreau said the situation is getting urgent, since many health-care agencies won’t allow their staff to carry a child weighing more than 40 pounds. “Something needs to happen soon,” she said.
All donations received will be placed into a special needs trust fund for Connor, allowing the family to begin the process of making their home more accessible to the boy’s growing needs.
For more information, go to connorscure.blogspot.com or email kmullaly@gmail.com.
Link to article: http://www.unionleader.com/apps/pbcs.dll/article?AID=%2F20141119%2FNEWHAMPSHIRE09%2F141129933&template=mobileart
Union Leader Correspondent
Published Nov 19, 2014 at 10:04 pm (Updated Nov 19, 2014)
WINDHAM — Six-year-old Connor Mullaly has faced many hurdles in his short life, but that hasn’t stopped him from swaying to his favorite tunes.
It is unclear what the future will bring — or how many dances remain — for the blue-eyed Golden Brook School first grader, who was diagnosed with Duchenne muscular dystrophy at age 3.
One thing is certain, however: Connor will soon need a new bedroom. As he continues to grow, it’s getting increasingly difficult for his parents, Kira Mullaly, a software engineer, and Jon Mullaly, a paramedic, to carry him up and down the stairs of their two-level home.
Duchenne muscular dystrophy (DMD) affects approximately one in 3,600 boys. The incurable genetic disorder causes progressive muscular degeneration, eventually leading to paralysis. The average life expectancy for DMD patients is around 25.
The Mullaly family, which includes siblings Liam, 8; Declan, 5; and Keely, 3; prefers to focus on the promise each new day brings.
The couple, originally from Massachusetts, moved to Windham nine years ago to raise their family.
Several years ago, when Connor was experiencing speech delays and other symptoms, his parents brought him to their pediatrician. After lab tests revealed muscle trauma, Connor was transported to Dartmouth Hitchcock, where neurological and genetic tests confirmed DMD.
Kira Mullaly described her son as a happy child, one who was excited about his hospital stay as it meant staying up past his normal bedtime.
“For us, the news came as a huge shock,” she said. “But in a way we’re luckier than a lot of families, since this condition often goes undiagnosed for a number of years.”
The next two years were rough on the Mullaly family, as Connor’s parents struggled with the realities of the diagnosis. The family later learned Connor also has autism, and the little boy currently receives daily occupational, speech and physical therapy. Nursing staff regularly visits their home to help the family care for Connor, who currently shares an upstairs bedroom with his two brothers.
“He’s about 40 pounds now and is getting to the point where he’s too heavy to be carried up and down the stairs,” Kira said. Connor doesn’t know he needs a new bedroom yet, but his parents are guessing he’ll be pretty excited about it.
Perhaps not as excited as he was last weekend, when he had the chance to meet one of his favorite musical performers, DJ Steve Aoki, following a performance in Connecticut.
“Connor loves the beat and the fast tempo of electronic and dance music,” Kira said. “We don’t know how long he’ll be able to dance for, as his body begins to fail. But dancing with his favorite DJ is something Connor won’t forget.”
While Connor is currently able to walk, doctors have advised having him avoid the stairs in hopes of preventing additional muscle damage. Kira Mullaly said the family is now facing the options of installing a $10,000 stair lift system or building an addition on their home.
Adding a stair lift would be a temporary — and expensive — solution, Kira said, since their home’s front door would need to be widened to accommodate a lift system and the upstairs hallways aren’t wide enough to accommodate the wheelchair Connor will eventually need.
While the family has researched their options for grant funding, Kira said they’re currently stuck between a rock and a hard place.
“We’ve been told we need to have Connor’s room built before we can even apply for state handicapped-accessibility funding,” she said.
Family friends have already offered to pitch in with construction efforts, but donations of cash and construction materials are needed to begin that process.
In late August, Jamie Carreau, a licensed nursing assistant who helps care for Connor, created an online fundraising page, Connors Crusaders, on the Go Fund Me website.
As of Wednesday, donations totaled $2,115, though the goal is to raise $100,000.
Carreau said the situation is getting urgent, since many health-care agencies won’t allow their staff to carry a child weighing more than 40 pounds. “Something needs to happen soon,” she said.
All donations received will be placed into a special needs trust fund for Connor, allowing the family to begin the process of making their home more accessible to the boy’s growing needs.
For more information, go to connorscure.blogspot.com or email kmullaly@gmail.com.
Link to article: http://www.unionleader.com/apps/pbcs.dll/article?AID=%2F20141119%2FNEWHAMPSHIRE09%2F141129933&template=mobileart
No comments:
Post a Comment