A Connecticut firefighter who united a community when she refused abortion after receiving a heartbreaking diagnosis, has died.
Two weeks after she and her husband learned they were expecting their first child, Amanda Bernier received the devastating news that she had ALS (amyotrophic lateral sclerosis) better known as Lou Gehrig’s disease. Despite doctors advising her to abort in order to better maintain her health, Bernier refused.
She gave birth to baby girl Arabella Grace on November 4, 2014. By that time Bernier was unable to walk and had lost over 50% of her lung function. Despite the odds against her, she fought on, living for nearly two more years after her daughter’s birth. On her Facebook page it was announced that she died in September at the age of 32.
“It is with a heavy heart to let you know that Amanda passed away,” it said. “She is now free from this horrible disease. Amanda fought until the very end and inspired so many. Her infectious smile radiates through our beautiful daughter. Our family is forever grateful for all the love and support that so many have shown. Words alone cannot express our gratitude. The family respectfully requests privacy during this time. May the grace of God be with you always in your heart.”
Over the course of those two years, volunteers built the family a more accessible home and Bernier made sure to enjoy her time with her husband and daughter. Eventually, she lost the use of all of her body except her eyes and used an eye-tracker program on her tablet to communicate. She created a scrapbook of memories for her daughter and shared her struggles and triumphs on Facebook – including breastfeeding her daughter and working from her bed selling Jamberry in order to help pay her medical bills.
Bernier lost both her mother and grandmother to ALS and before she died she asked everyone to help find a cure for her daughter “and all of the unborn future ALS patients.”