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.
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.
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,
c/o Barb Minges
50 Bradley Corners Rd.
Madison, CT 06443
Posted by Christopher Steines
With the latest fundraisers completed and check donations tallied, the total donations are astounding. We are completely overjoyed to announce that we have far surpassed our goal by over $100,000.
This total does not even begin to reflect the donated materials and labor that were given during the construction of the new house.
Amanda and Chris are delighted to be able to enjoy their new home with baby Arabella and are so thankful for and astounded by the support everyone has continued to show and provide.
We cannot say this enough: THANK YOU!
Posted by Christopher Steines
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
Posted by Christopher Steines
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.
For pictures of the project and the house, visit http://www.amandas-angels.org/
Posted by Christopher Steines
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.
Congratulations Amanda & Chris. Arabella is beautiful as are her parents inside and out. Blessing to you all.
I am so very happy for you! Arabella looks so sweet - as do mommy and daddy!
Congratulations Amanda and Chris on the birth of your daughter! Keeping your family in our thoughts and prayers!
PLEASE PLEASE PLEASE go to a lyme specialist for another opinion. I was diagnosed with MS and many others were misdiagnosed with Parkinsons and ALS. The CDC and ILADS.org do not use the same standards for testing, diagnosing and treating lyme and confections. I was told for years that i did not have lyme as was my son. Dr . Raxlan in NYC gets it. PLEASE try, as late stage lyme often does not show up in tests. I am 56 and growing up it was rare to know someone with MS, ALS, Parkinsons, eye floaters, RA etc etc. Now it's everywhere because it's often TRIGGERED by a parasite. Get rid of the parasite cloaked in your body and the autoimmune issue dissipates. It's logical.
No one deserves to get ALS, especially a pregnant woman. I am fighting for my life against advanced neurological Lyme disease with many co-infections, including deadly Babesia, for which there is no medication available designed to treat and wipe it out. Did you know that many with ALS found out they were misdiagnosed and the real cause of their illness was Lyme disease, and were able to recover their health once they treated the Lyme disease? Please know the fact that almost 50% of those who have Lyme never knew they were bitten by a tick, because the nymphs are so small they are barely visable. And, it is now known that as many as 40-60 percent did NOT get a bull's eye rash. The reason why you and so many others go undiagnosed is because the majority of doctors are completely ignorant about Lyme and how to diagnose it, for they simply rely on totally useless tests, which even the CDC has finally admitted are useless. Do yourself and your unborn child a huge favor and possible life saver by seeing a Lyme Literate MD. Many Lyme support groups can help you find one nearest to you, it cannot hurt you or your baby and may save your lives.
Hello Chris Amanda and peanut u don't know me but u father works with my friend Jerry I just want to say my prays and thoughts r with u
I am very moved by your story! I am a healer and would love to offer my services, please have Amanda private message me...thank you and much Love to your family!
My thoughts and prayers are with this family. My heart is breaking reading this story. God Bless!
Hi, My name is Janie Werner - my husband just passed away this week after a very long battle with MS - I have three power wheel chairs, a hoyer lift, hospital bed with an alternating pressure air mattress, as well as a home recently adapted for handicapped living. Please feel free to contact me.
Not to through ice on the situation or be a wet blanket, but have you asked ALS directly?
Well..Let's hope that all the Soap sells tonite at the Madison Beachcomber..We will be at the Scranton seahorse Inn.. 5:30-7:30pm $5 per Heart..that's $1000.00...the last soap sold the person get a $100 custom ed Spa basket..and I am ready to make soap for the next event... God Bless all # of you Dyan !!
i am Kelsey Hodge's cousin. I am a FT RN and have also had a very specialized care management business for some years now. I live just over the madison line in killingworth. I am happy to help you both. 860-510-6983
Our prayers are with you and your family
May God be with you and your family always!!!
Is there a FB page where we can follow the family and see how they're doing?
Amanda and Chris. I am Bill Fowler's sister. I currently have a very flexible job. If you need a ride, or some cooking/cleaning done or just someone to vent to. Please reach out to me.
Bless your hearts, all of you. Please get better. I will pray. Please do not give up. God bless your little Peanut also. I think she will help bring health and healing, in every way.
I am praying for you three (!). I am a medically retired flight paramedic/RN and volunteer firefighter. I also have ALS. I have posted your story on my Facebook wall and I hope that some of my FF/EMS friends will join me in helping however we are able. You are never alone. Our Heavenly Father is with you as you make this difficult journey.
MAC Angels supports families with ALS in the tri-state area. Our mission is to enhance the quality of life for patients, family members and caregivers impacted daily by ALS, by providing the compassion, education and unique resources needed to manage the devastating effects of this disease. We are here to help 914.637.7010 or firstname.lastname@example.org. For more info our website is http://macangels.org