Amanda and Chris Bernier, and their toddler Arabella, are in many ways, a rare family. Mom Amanda and dad Chris are both Wisconsin volunteer firefighters. Or at least Amanda was, until she was diagnosed with amyotrophic lateral sclerosis, or ALS, which was the disease that famously claimed the life of Yankee legend Lou Gehrig. These days, many people know of the disease because of the wildly successful Ice Bucket Challenge campaign.
Amanda received the devastating diagnosis just two weeks after learning she was pregnant. Happily, she defied the odds and delivered a healthy full-term baby girl.
Amanda is decidedly brave considering her family link to the disease, and the fact that her particular type of ALS is especially aggressive. She lost both her mother and grandmother to ALS.
The only part of her body that moves is her eyes, which are becoming weaker and weaker. Thankfully, she is able to communicate using an eye tracker program that works in conjunction with her tablet. It is centered right in front of her eyes, and the movements translate into typed words.
And she has a job too! She sells nail wraps for the Jamberry company, using her computer to sell to clients, because she wants to do her part to pitch in on the medical bills.
Chris says the biggest misconception people have is that Amanda can’t comprehend everything. He explains that this is just a physical illness, and that she can fully hear and understand everything, and feel everything too. She frequently types out to Chris that she has an eyelash in her eye and needs his help, and jokes that her ALS and long eyelashes are not a good combination.
Amanda is to the point where she needs 24/7 care. She cannot survive without a ventilator and has a feeding tube. Her mattress continually circulates air to prevent bed sores. Chris is able to help out a couple of days a week by working from home due to his employer’s flexible work schedule. The couple tries to focus on the positive, having fun watching their baby eat yogurt and cookies. Nurses care for Amanda when Chris isn’t home, and a full time babysitter comes into their home to mind Arabella.
Amanda and Chris are extremely thankful for the overwhelming community support, which started out to raise $100K via GoFundMe, but currently is well over $380K with funds still coming in. Neighbors even demolished the couple’s original 780-square-foot house and built a brand new 1,580-square-foot home for the family in 2014.
Amanda says she can feel the love from the walls of the house, and she is relishing every day that she can bask in that love.
To read more about Amanda and Chris, click here.
To make a donation, visit Amanda’s GoFundMe page by clicking here.
