Help Will Steuber & Family Navigate Life with ALS

In September 2019, after months of mysterious symptoms, our family was devastated to learn that Will, my husband and father to our two kids, was diagnosed with ALS. Also known as Lou Gehrig’s Disease, ALS is a ruthless, brutal and terrifying disease. Despite our lives being completely upended by ALS, Will continues to inspire us all with his endless positivity and contagious enthusiasm. It was this same enthusiasm for life and adventure, combined with his ability to not take any of it too seriously, that made it easy to fall in love with Will over 20 years ago.

He's the dad that loves to embarrass the kids by singing and dancing to 80's tunes down the grocery store aisle. He's the husband that works a 50-hour workweek at the office and then comes home to spend the entire weekend building a deck, treehouse or new kitchen. He’s the proud dad that coached the kids' basketball and soccer teams, talking strategic plays the night before with our son, Mason. He's the neighbor that rigged up a wooden trailer to hold 4 of his canoes then threw 2 more on the roof of his pickup for a river adventure down the Delaware. He’s the guy who rents an RV and takes the kids to every National Park under the sun. He is the youngest brother to eight very special and close-knit siblings. He’s the friend who wants to host all the guys for beers and guitars around the campfire and the first to make the toast, letting us know how fortunate he is to have the greatest family, friends and neighbors a man could ask for.

These days, because of ALS, our life now involves scooters, wheelchairs, walkers, shower chairs, bidets, grab bars, ventilators, therapies and special medications. However, as my husband's body becomes weaker and his voice quieter, and I find myself helping him to shower, dress and eat, I am still in awe of his unwavering positivity, ruthless determination and goofy sense of humor. Our two amazing kids, Tighlie (17) and Mason (15) keep us laughing and make us incredibly proud of their ability to work hard and play hard. Fortunately, like their dad, they can act like goofballs and “be the best version of themselves” even in the face of great adversity and insurmountable odds.

As I sit here holding back my tears and wondering how the heck our life turned so upside down so fast, I must put my pride aside and ask the world to donate to our GoFundMe to help us pay for what people tell me is yet to come. It is getting harder and harder to pay for his treatments and care. Will is no longer able to work, and as of last year, I quit my job and shut down my snack business to care for him full-time.

ALS is a progressive, neurological condition that causes muscle tissue in the body to die and eventually lead to paralysis. People living with ALS are stripped of their ability to swallow, move and eventually breathe on their own; the mind, however, remains healthy and acutely aware. ALS is fatal with a life span of typically 3-5 years. There currently is no cure for ALS. ALS is also known as the “bankruptcy disease.” The financial challenges of caring for a loved one with ALS are astronomical, even with the best insurance.

My family thanks you, from the bottom of our hearts, for your generosity. We are incredibly blessed to have the support and love of each and every one of you.