Amanda & Chris 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,
c/o Barb Minges
50 Bradley Corners Rd.
Madison, CT 06443