June 2026 update:
It's been two year, and this disease is relentless, and just when we've overcome another hurdle, ALS takes more away. Marianne has lost almost all voluntary movement, except some ability to move her head and shoulders and, thankfully, her breathing remains intact.
We are so blessed to be surrounded by friends, family, and community who visit often, send her cards and treats. Thanks to the Team Gleason foundation, she is able to use an eye gaze tablet to communicate, but it is still very difficult.
We love Marianne, and we want her to remain comfortable and taken care of in her own home. She now requires 24/7 care, and her husband is her primary caregiver. We've found a network of trusted and beloved caregivers that we consider part of our family.
Unfortunately, insurance does not cover any of the caregiving costs she needs, and this has fallen on Marianne's family. In addition to paying for the rest of the accessibility rennovation, hoyer lift, power chair, and a wheelchair van, money is very tight for this small family.
Having alternative care allows Jacob to spend time with her son, Max, and Marianne as a husband, not just a carer, and to recuperate and rest.
Because of our community, we were able to make Marianne's home accessible right in time, and we are grateful for that everyday. Ongoing support can help Marianne and family enjoy their remaining time together, and focus on making memories.
$25 pays for one hour of caregiving
$60 pays for a month of feeding tube supplies
$200 allows Jacob to sleep through the night knowing Marianne is cared for.
$600 pays for one 24 hour break from caregiving for Jacob
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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.
