Support Dan Lees in his fight against ALS

Dan is one of the good ones. Actually, a great one. Father, friend, Papa, brother, son, husband, you name it. The giving, caring, gentle, hardworking, big loving, drop anything to lend a hand kind. The kind who my kids run to with excitement when he walks in the door because they know he is going to be instantly down on the ground building block towns, pretending with monster trucks and dolls, giving piggie back rides, and playing chase.

My mom found her happily forever after in him and they tied the knot just a year and a half ago. Both in their late 50s, lucky in love, and looking forward to life. They found a little house in the country with just enough land to spoil grandkids (12 of them) with pony rides, a goldfish pond, and adventures through the woods on the side by side. A barn to build, soup things up, and create in with his 15-year-old son. They truly were living their dream, but the dream was cut short when Dan started having unusual tingling and spasms just a few months later.

ALS. When they told me, I don't think I fully grasped what it meant. I knew it was bad, but I didn't know the details. I didn't comprehend the immediate change that would come to their lives. Our lives. Everything changes. ALS comes hard and it comes quick. I couldn't foresee how drastically and quickly daily life is taken over by this disease. Not just physically for Dan, but emotionally for all of us. (I don't think I've had one conversation with my mom since, that she hasn't welled up with tears.) And then there is the paperwork, the research, the trying to figure out who to speak to, where to go, what trial to join, and how? It is completely overwhelming.

Then comes the money. As soon as you are diagnosed, you become 'disabled'. You lose your job. Dan lost his job of 15 years as a local 137 pipe fitter or was forced to leave it I suppose. And suddenly their whole lives have changed. Their dreams of retirement and growing old together taken away, and in its place an impossible financial burden placed on their shoulders.

ALS is cruel and it is expensive. The average annual cost per patient is estimated to be $143,000. In less than a year it has taken Dan's ability to walk freely, and therefore his ability to build. (Did I mention he could build anything? He's like a master carpenter, machine guy, he can do all the things.) In addition to the crazy costs of traveling to doctor appointments, seeing neurologists, and purchasing the never ending medical equipment and accessible vehicle necessary as this disease progresses to steal his mobility, there is the house.

My mom and Dan live in a small house, with a gravel driveway, and no garage. It isn't ideal given the circumstances. It would be incredibly difficult, if not almost impossible to retrofit to allow a wheelchair, scooter, etc. to move through. Instead, they have chosen to build a small addition to the side of the house. It will contain a garage, a living area, and a bathroom for Dan that will be accessible and accommodate him as the disease progresses. That all of course comes at a huge cost. An out-of-pocket cost.

In the midst of all of this, my mom who was a loyal employee of a physically demanding job at Akorn Pharmaceuticals lost her job of 36 years. With no warning whatsoever, Akorn went bankrupt and shut its doors. Hundreds of people showed up to work and were shown to the door with zero compensation of any kind, and less than one week remaining on their health benefits. 36 years. Now nothing. The silver lining is that she has been given the freedom of time. Time to spend with her husband. But that comes at a literal cost.

So here is where we are. I need help to help my mom and Dan. I know he doesn't want to ask because he has always been the guy to get things done. Even a few months ago he envisioned that he would be able to help build this addition to cut down on costs. With ALS, a lot can and does change in a few months. Construction costs are high, and there was talk of taking things out of the build plan. Things that Dan needs and that my mom will need to take care of him when he can't take care of himself. Space that he will need.

I want to ensure they have what they need. So I am humbly asking that if you can share, please do. All of this is impossibly hard, and I just want to lighten the load a little. Thank you so so much for your help in doing so.

Amanda