We have some fantastic news to pass on from Amanda and Chris:
Arabella Grace Bernier was born on Tuesday, 4 November 2014 at 0747 hours weighing at 6.5 lbs, 19 inches long. Both peanut and mom are doing great!!
Amanda and I are very appreciative and grateful for all the prayers, positive thoughts and well wishes that we have received. We are taking it all in and enjoying this special moment with our little bundle of joy.
Amanda, Chris and Arabella
Cards and notes are being accepted at:
North Madison Volunteer Fire Company
864 Opening Hill Rd
Madison, CT 06443
Thank you to everyone who has contributed, helped support at our events for Chris and Amanda, and have sent messages to the Bernier family. Amanda and Chris are still astounded by the support from the community, friends, and even complete strangers. Since the last update, there have been some major milestones reached. Amanda, Chris, and Peanut are all doing very well. Amanda's tracheostomy went well and Peanut is growing quick.
For two months, volunteers and contractors from around the Connecticut shoreline have been preparing the Bernier property for delivery of a new modular home. Their efforts were capped off on Monday when the new home was delivered in 3 sections. The pieces were lifted and placed onto a new foundation on Tuesday. “This is a great day for us,” said Brian Koczak who has been acting as one of the construction managers, along with Bob Blundon, Bill McMinn, Doug Minges, and Ed Delmonte. “It is tremendously rewarding for all the volunteers to watch as this house is put together.”
Much like an old fashioned barn raising, volunteers swarmed the site on several occasions to help. Many individual volunteer contractors also put in time for more skilled tasks. Over the course of 8 weeks they moved all the household belongings into storage, secured utilities, demolished the existing home, installed a new septic system, excavated and poured a new foundation and built framing to support the new structure.
Chris Bernier was often on site assisting and watching much of the activity, shuffling back and forth between Madison and the hospital, where Amanda is being cared for until the baby arrives. Chris captured all of the action on camera and provided Amanda with up to the minute progress reports. Both Chris and Amanda would like to extend their deepest thanks to all who have contributed and helped make this home a reality. The goal of the volunteers was to provide some relief from the strain on the Berniers as Amanda battles ALS. The Berniers are staying positive and focused on the health of their unborn daughter. The new home is a place for the family, and for the hope, to reside.
Special thanks to LaFata and Son, Shoreline Modular Homes, Tom Wilcox, Cherry Hill Construction, Scooby’s Trucking of Guilford, Haynes Materials of Seymour, Aiudi Concrete of Westbrook, Essex Concrete, Kyttle Sanitation, Ahearn & Sons, Simmons Quality Home Improvement, Torrison Stone, Landon Lumber, Advantage Overhead Door, Phoenix Cleaning and Restoration, Ring’s End Lumber, and Lowe’s Home Improvement. Without the gracious help of these local businesses and contractors, this project would not have been possible, costing an estimated $350,000.
Thank you everyone for your continued support of Amanda, Chris, and Peanut. Below is an update from Chris and Amanda:
Thank you for all the prayers, support and love while our family goes through this journey. Amanda and I are so grateful and blessed to be surrou...nded by such a caring community. We wanted to provide a brief update: Amanda is 28 weeks pregnant and Peanut is doing very well!
After 3 1/2 weeks of being in the hospital, Amanda will be getting a tracheostomy on Thursday. This is a surgical procedure that will create an opening through the neck into the trachea to help her breathe. The trach and ventilator will hopefully allow Amanda to get to full term.
We ask that you continue to keep our family in your prayers.
Chris, Amanda and Peanut"
Again, thank you for your continued support and messages. The Bernier family is extremely grateful for all the help they are receiving through this very difficult time.
Thank you to everyone who has contributed thus far. The outpouring of support from everyone is truly unbelievable. We are currently developing a website that will contain updates on Amanda and Chris, as well as upcoming fundraisers.
I wanted to pass this message on from Chris and Amanda:
"Amanda and I believe that in life everything happens for a reason; even if we don’t understand what that reason is. In times of such chaos in our lives the grace of God is with us and all those supporting us. There’s no denying that we have a long road ahead. However, Amanda and I are truly blessed and very much appreciative of all the thoughts, prayers, gifts, fellowship and kind words. BUT, words alone cannot express how grateful we are in our hearts in receiving so much support from family, friends, colleagues and strangers.
ALS. Amyotrophic lateral sclerosis. Lou Gehrig’s Disease. Amanda Bernier’s diagnosis hit only days after she and her husband Chris received joyous, surprising news: They were expecting their first child, their miracle, the baby they’d wished for during years of working side by side as firefighters and emergency medical first responders. But something was wrong. A runner who had raced only weeks before, Amanda felt her legs giving out as she climbed into a fire truck when answering yet another emergency call from her community. Chris helped support her up the high, metal steps. Nothing like this had happened during the years they’d both served as “Nomads,” volunteers with the North Madison Volunteer Fire Company whose motto is “Neighbors Helping Neighbors.” ALS had begun to change their lives forever.
And quickly, too. Since that day on the truck, Amanda and Chris have learned she has the most aggressive form of the disease.
What does ALS mean for Amanda? ALS is a progressive neurodegenerative disease that causes the deterioration of motor neurons. As Amanda’s motor neurons die, her brain will no longer be able to control her voluntary muscle movements and consequently, her muscles will atrophy. She has already begun to lose the ability to move her arms and legs and will lose the power to talk, swallow and breathe. Eventually paralysis will set in and then, death. There is no cure or treatment.
But there is life. That little heartlight inside Amanda is already 18 weeks along, and she and Chris are going for broke for their unborn child, knowing that pregnancy accelerates the progression of ALS. Within weeks, Amanda’s condition has worsened to the point where she can no longer walk and has lost over fifty percent of her respiratory capacity. She is living as long and strong as she can for the sake of “Peanut,” as she and Chris are calling their little girl. (They have just learned the exciting news that Peanut is a girl at this week’s appointment!) What a gift it would be for Amanda to meet Peanut in person, to see her own daughter face to face. She doesn’t know if she will.
Let’s make that meeting happen by easing summertime and their current living situation in ways that make every day healthier and therefore happier for Amanda and Chris. Together our financial gifts can relieve them of their stressors so that they can focus their energies on Amanda’s well‐being and on her living a rich life not only up to that face‐to‐face moment with Peanut, but long after.
Here’s what the Berniers need most: 1) Space. Amanda and Chris live in a 780‐ square foot home. They need space for a bedroom apart from the main living area. Amanda will need a hospital bed, a Hoyer Lift, a commode and additional medical equipment. Presently, she cannot fit her wheelchair through the bedroom or kitchen doors. The tiny kitchen will also require modifications providing space for more than one person to prepare meals and for wheelchair accessibility. 2) A wheelchair van. Otherwise Amanda will be homebound. 3) Funds for future medical bills. The bills will be astronomical. Amanda is still working as a scientist in a biotech company despite being unable to walk and breathe easily. Chris is the Chief of Madison Emergency Medical Services and serves as a Deputy Chief with the North Madison Volunteer Fire Company. As hard as they’re working, they can’t make nearly enough to pay for the expenses ahead.
Both Amanda and Chris are known for helping neighbors on their worst days. They do it for no reason other than because helping others feels right. It’s in their blood. They come from long lines of firefighting and first‐responding grandfathers, father, brother and uncles. Saving others is what they do, what they’ve always done and what they know. Amanda and Chris have consistently been the ones who appear; they’re the ones who have shown up gentle and skilled and caring in our dark nights to help us when we’ve called for help.
And now they need us through the days and nights ahead.
A few weeks ago Amanda turned 30. Let’s make her birthday last. Let’s help her live well; let’s help Chris help her; let’s see them through to the day when they count the fingers and toes of that baby‐girl heartlight all the world can see. Let’s put our hearts together and be with them on the road. For what you do for them: Thank you, because you do it for all of us. And may your kindness come back to you in love, gratitude and joy for every day on this earth. Shine on.
If you prefer sending a check, please make payable to Christopher Bernier and mail to,
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