ALS ~A Call To Arms ~ Chris's Story

This is not my story to tell. I have asked my cousin Stephanie to share the nightmare she and Chris are living. ALS has no cause. ALS has no cure. Please join me in helping them deal with this shockingly cruel and fatal blow.

October 20, 2017. The day our world was turned upside down. The day my husband Chris Heitner was diagnosed with ALS, or Lou Gehrig's Disease, a terminal disease with no known cause or cure. A disease that will take away his ability to walk, to talk, to eat, and eventually to breathe. A disease that will take a husband away from his spouse, a father away from his sons, a relative away from his family, and a friend away from his buddies. It’s a cruel, unforgiving disease, and I am still waiting to wake up from this nightmare that has enveloped us.

When I was 16 years old, I fell in love with Chris for the first time. He was my first love. He has been my only love. Although we didn’t start a life together as a couple for another 12 years after that wonderful summer, he was never far from my thoughts and was always in my heart. One day in 2000, when I was living 3000 miles away in Omaha, NE, I got a phone call out of the blue. It was him. We hadn’t spoken in at least 3 years. The next morning when I went to work, a co-worker told me I looked “ecstatic”. I hadn’t said a word, I had just walked in the door. But my face told the tale for me. That was almost 18 years ago. We have been together ever since.

I still can’t reconcile the fact that someday much, much sooner than I ever thought, he will be taken away from me by a despicable disease that apparently attacks randomly with no known reasoning or cause. It makes me so angry. Doesn’t it know that Chris is one of the good ones? He is someone who makes the world a better place, and I won’t be the only one bereft by his loss. Hell yes, it’s unfair. Hell yes, I want to scream and cry and stamp his ALS into the dirt where it belongs. Why him? Why my Christopher? I am never going to know what he looks like as an old man…

So many of our friends and family have asked what they can do to help. My cousin, Kim Nichols, is coordinating this GoFundMe on our behalf. The funds collected will go to support our family as we struggle with these great changes. We have always lived paycheck to paycheck, with very little savings, so financially we are pretty much not prepared for this disease. Any donations you wish to make to this fund will be highly appreciated. Your donations will be applied to moving expenses, as we are going to have to move to a wheelchair accessible home in the very near future. They will go to supplement any medical costs that our insurance and/or Medicare won’t cover. A dear friend is loaning us the money for four airline tickets to Arizona and back, so we can enjoy a family Christmas among loved ones while Chris is still mobile. Thank you, Dustin. ♥ However, some of these donated funds may go towards a bucket list of things Chris wants to do while he is still able. If you decide to donate, and you want to specify how you would like your donation to be applied, please specify and we will make sure your wishes are carried out.

I am also including a list of physical items Chris will eventually be needing. We don’t want you to spend any money on these things; just if you have any lying around or know someone who may, we would be happy to take them off your hands.

Thank you all from the bottom of our hearts. This whole thing has been brutal, but knowing we are surrounded by loving friends and family helps so much and means more than you know. Thank you…we love you.

Chris & Stephanie Heitner

• Walking cane
• Walker
• Manual wheelchair
• Hospital bed
• Alternating air mattress
• Recliner chair
• Shower chair
• Shower commode chair
• Bidet