Let's make Marianne's home accessible! ALS

On February 2nd, 2024, my sister-in-law Marianne received devastating news: at the age of 42, the cause of her unexplained arm weakness was determined to be a terminal, progressive, and untreatable disease called ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease. ALS affects all voluntary muscles, gradually impacting her mobility, communication abilities, and ultimately, even her ability to breathe.

Marianne, her 11-year-old son Max, her husband Jacob (my brother, and loving step-father to Max) live in a small, cozy home in Sandy. Unfortunately, as Jake often remarks, it is ”the most disability unfriendly house” featuring a split-level layout, narrow staircases, and small bathrooms, none of which are situated on the ground floor.

There is, however, a silver lining: their attached garage. We aim to transform this space into an accessible living area complete with an ADA-compliant bathroom, bedroom, and family room, as well as install a ramp to the front door, insulate the area, and connect plumbing, electrical, heating, and air conditioning. The estimated cost for these renovations is approximately $50,000. Additionally, there may be unforeseen expenses, and they are facing many financial strains ahead, including the need for a specialized power chair tailored to ALS requirements and a wheelchair-accessible van so Marianne can remain an active part of our lives and continue creating cherished memories with her family and friends. The annual out-of-pocket costs for families living with ALS is approximated at $250,000.

It’s impossible to convey how catastrophic this diagnosis has been to Marianne and her family, but we have seen love and support overflow in the past few months. It’s a testament to how beloved Marianne is to all of us, to see her rallied around by so many. Any donation, no matter the size, will be incredible in lessening the substantial financial burden of ALS, and helping their family focus on spending as much time together as possible.