Mom Who Documented Her Battle With ALS on Facebook Passes Away 

Amanda Bernier and her husband
Amanda Bernier and her husband Courtesy of Amanda Bernier/Facebook

In March 2014, just two weeks after Amanda Bernier learned she was pregnant with her first child, the then 29-year-old received a devastating diagnosis: ALS, also known as Lou Gehrig’s disease. “I went from running races, working in a lab and firefighting to not being able to move anything but my head and on a ventilator in 5 months,” Bernier wrote in an emotional Facebook post. Though doctors warned Bernier that she might not live long enough to deliver her daughter, the determined volunteer firefighter welcomed healthy, full-term baby named Arabella Grace on November 4, 2014.  

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And Bernier continued to defy the odds. The Madison, Connecticut-based mom, who was given a 12-to-18-month life expectancy, survived for two and half years. On Wednesday, September 21, Chris Bernier took to the Amanda’s Angels Facebook page to share that his wife had passed away at the age of 31. “She is now free from this horrible disease,” he wrote. “Amanda fought until the very end and inspired so many. Her infectious smile radiates through our beautiful daughter.”

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Amanda made headlines in September 2015 when she penned a viral post about overcoming tremendous obstacles to breast-feed Arabella. Because of her inability to move, nurses and relatives held the baby to her breasts. “I delay taking my pain meds so that I don’t have to pump and dump,” Amanda wrote. “I can’t take care of my daughter, but I can give her the gift of breast milk. I will continue on until my body no longer produces.”

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Amanda Bernier
Amanda Bernier Courtesy of Amanda Bernier/Facebook

Knowing that she wouldn’t be here to watch Arabella grow up, Amanda wrote cards and letters for her little girl to open on future birthdays and Christmases. “In one of my letters, I wrote to thank her for everything that she has done for me — the joy she has brought to my life, and the way she has given me strength to wake up each day,” Amanda told Today in September 2015. “In other letters, I try to give her the confidence to pursue her dreams, encourage her to be kind and loving, and let her know there is always a positive side to any situation.”

“I tear up every time I think about how much I love her,” Amanda said. “I am so blessed to have the opportunity to be a mom.”

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