Community mourns loss of Madison firefighter diagnosed with ALS

Credit: Amanda's Angels - ALS Facebook

Credit: Amanda’s Angels – ALS Facebook

MADISON–It started out as an issue with her legs. Days after Madison firefighter and EMT Amanda Bernier learned she was pregnant with her and her husband Chris’ first child, her legs gave out while she was getting into a fire truck for an emergency call. As a runner who completed a race just weeks earlier, Amanda knew something was wrong.

Amanda was diagnosed with ALS, and the most aggressive form of it. The neurodegenerative disease made it difficult over the past two years for Amanda to move her arms and legs. It was progressed due to her pregnancy, but the couple did not want to lose the opportunity to have their child, so they decided to move forward despite the risks. Here’s what she said about that decision:

I waited my whole life to have a baby. Everything I did was for my future child. I worked 3 jobs to get out of debt so we could buy a bigger house, I ate nothing processed, used glass containers to store food, my toiletries had no chemicals, I exercised 5x a week, ate only whole foods, was a vegetarian, etc all to give my future baby the best place to grow. So you see, I already loved Arabella long before she was an Arabella.

I am also a Christian so I would not feel right aborting the baby when soon I would want to be knocking on Heavens door.

I told my doctors I didnt care what happened to my body as long as Peanut was safe and that I would get her to full term. During the 3rd trimester I could not breathe with out the vent or move anything but my head. However I delivered her at 39 weeks healthy and perfect. Its amazing how my dying body gave life to such a precious little girl. We gave life to each other. I would not have gone on a vent or feeding tube if not for her.

So in my mind there was no question if I was going to keep going forward with the pregnancy. She certainly is a miracle.

And Amanda kept fighting. She survived 29 months after her diagnosis, despite an initial 12- to 18-month life expectancy.

This week, a Facebook page that Amanda started to update the community on her disease said that she had passed away. Amanda leaves behind a 2-year-old daughter named Arabella and her husband, Chris.