Marianne Has ALS

(Note: This is the first Blog Post that is written by both Jacob and Marianne.  I have noted the author at the beginning of each section)

Jacob:

Is it not enough to have your wife diagnosed with a terminal illness that will completely paralyze her and cut her life short?  Does it also have to be so fucking expensive?! 

There’s no way around it: ALS will drain your bank account dry.  Doctors, medication, mobility aids, wheel chairs, home renovation and more.  It would help if this disease only affected the idle rich.  But it seems to affect everyone.

To get this out of the way: Yes, we have a Go Fund Me.  You can find it here: https://www.gofundme.com/f/lets-make-mariannes-home-accessible-als.  We appreciate every donation but we also understand that not everyone can donate.  If you’re our friend please know that your friendship and emotional support means a lot to us with or without a donation. 

Marianne: 

I’m honestly not sure where to begin. Thankfully, the medications for ALS are currently covered by my health insurance. One silver lining to this whole debacle. Unfortunately, the things I need to live my life at each stage of this disease are not covered by insurance. It’s the small things you don’t think about (special cups, utensils, satin sheets), the mobility things you do think about (cane, rolly walker, push wheelchair, and motorized wheelchair), the big things that can financially ruin us if ANY other thing goes wrong (a garage renovation because STAIRS, a wheelchair accessible van), and the fun stuff that makes you question why we are even asking for money (memory making experiences for Max and Jacob when I’m gone).

I know that no matter what – it will be ok, we have some amazing friends and family who have provided so much support and I have faith that God will provide both now and in the future for Max and Jacob. But in this moment, survival + the cost of living feels defeating, overwhelming, isolating. Asking for people to donate money or help out with their time- that is a whole other kind of anxiety inducing scenario. 

As Jacob said, knowing you support us is a lifeline – a little hug that warms the soul. Prayers, visits, calls, gifts, meals, and cards…these things have meant the world to me. Thank you dear reader for your support and love.