Support Joey’s ALS Caretaking Needs

My ALS has progressed to a point where we can no longer manage it as a family. We need to hire help for me. For the rest of my life. Which I will extend however possible.

Our ALS story starts as they all do: the tiniest of a sensation of a movement being “off.” In June of 2021, my left wrist drooped in a then vivid instant. 11 months later, May of 2022, I was diagnosed. My daughter (Otti) would turn two, 2 days later and my son (Walter) would be born less than 2 months later. I was wheelchair dependent by October, and retired as a civil engineer in February of 2023. When our life seemed to truly be coming together, it all fell apart. Just like that.

I’m now fully paralyzed, from a functional standpoint. I’m also non-verbal, having lost my voice. I speak with my eyes through a special computer. I have zero self sufficiency. If not for others, I would starve, unable to move or call for help.

My wife, Alli, is my full time caregiver. It’s easy to dismiss all that entails. That means she is responsible for my every single need. While physically demanding, it also carries a mental load. Not to mention that there is also our two little children counting on her. Plus a house to maintain, meals to prepare, and chores to be done. Lest she forget to take care of herself.

Our family has been extremely generous with their time, energy, and money to support us. While they have kept us afloat, it’s become clear that our current systems are not sustainable. We need your help.

By supporting us with a donation, you are giving us the gift of more time being who we want: parents and spouses. Less nurse and patient. We don’t want to ask for help, we don’t want someone else in our home, but we do want to be the best version of ourselves for each other and our kids. So here we are.

All our love and thanks -Joey, Alli, Otti, and Wally