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11/04/2015 07:30 AMAmanda Bernier, the Madison firefighter battling ALS while raising her newborn daughter with husband and fellow firefighter Chris Bernier, was one of this year’s honorees at the Connecticut District Exchange Club’s Salute to Connecticut’s Bravest, an award that recognizes outstanding firefighters from cities and towns throughout the state. The event, held on Oct. 15 at the Aqua Turf in Plantsville, honored a woman whose continuing fight has inspired so many in the local community and beyond.
Raised in a family of firefighters, Amanda joined the Lancaster, New York Volunteer Fire Department as an explorer when she was in high school and eventually became a senior member. In 2006 she joined the North Madison Volunteer Fire Company, and in 2011 she began work as an emergency medical services responder with Madison Ambulance.
Shortly after becoming pregnant in 2014, 30-year-old Amanda was diagnosed with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. ALS is a neurodegenerative disease that causes the deterioration of motor neurons, loss of voluntary muscle movements, and eventually death. Patients lose the ability to move their limbs and to talk, swallow, and breathe. Amanda’s ALS was a particularly aggressive form that had taken her mother’s and grandmother’s lives.
Although she did not know whether she would survive her pregnancy long enough to meet her baby face to face, Amanda and her husband welcomed daughter Arabella Grace on Nov. 4, 2014, and will soon be celebrating her first birthday.
Since Arabella’s birth, Amanda has earned national recognition for her efforts in raising ALS awareness. This year, despite losing her ability to both move any part of her body except for her eyes and breathe without a ventilator, she has written honestly and poignantly—via an eye-tracker—about her experiences as an ALS patient. Thousands have read and been inspired by her stories, shared widely on Facebook.
Local media outlets have featured stories about her work on behalf of the ALS Ice Bucket Challenge. Today.com, Parents.com and a host of additional online publications picked up her inspiring narrative about overcoming the challenges of breast-feeding Arabella after it went viral.
As a firefighter and EMT, Amanda learned firsthand the skills and mindset required to deal with the unpredictable, dangerous, and unknown.
“There are no routine calls,” she says.
She recalled a life-alert activation call, for instance. Normally such a call is a false alarm, nothing really, as people often set it off without knowing. Amanda and her partner, however, arrived on scene to hear an elderly man calling from the roof, where he’d fallen face-down after slipping on the moss in an attempt to clean his gutters.
“My wife can’t find out about this!” he told her repeatedly.
Amanda and her partner climbed on the roof and helped him back inside through his bedroom window.
Then there was the Christmas-time call, an accident on Route 80. The car had been going too fast around a curve, veered into the woods, and bounced back into the road. The father on the passenger side was dead. His semi-conscious son, suffering from double-femur fractured legs and a severe head injury, was pinned inside. Amanda crawled inside the vehicle, over his father, to stabilize the son’s head and give him oxygen. The son lived.
Later that same night, Amanda responded to another call that took her past the evening’s earlier accident scene. She steered around the spot into the opposite lane, unable to drive over the place where the father had just died.
“That was my worst call,” she says.
Determined to hold her own as a female firefighter, Amanda constantly trained and conditioned.
“The fire does not care if you are male or female,” she says.
Exercising was important to her job performance as a firefighter. On a personal level, she also exercised in case she had inherited that ALS gene that had taken her mother and grandmother. Maybe she could turn it off or delay its expression by staying fit and healthy.
Within months after running road races, however, she was unable to climb into a fire truck on her own. She turned around to her husband, behind her as she climbed the steps.
“My legs,” she told him.
Though she didn’t yet know it, gene mutation SOD1 had begun its course. That familial ALS known to her ancestors since the 1700s as the “Underwood Disease” had awakened in Amanda, whose family name is Underwood.
Amanda continues her work on behalf of ALS while writing letters and preparing gifts for Arabella to read on her birthdays, her wedding day, and other milestone occasions.
And she continues as a first responder, listening to radio communications and answering calls in the only way she can: prayer. Nevertheless, she adds, “If it’s your time it’s your time.”
Whether a routine lift-assist or the worst of calls, she is present and helping, still, at the scene.