This picture was shortly before my ALS diagnosis in 2012. Fast forward almost 14 years and I am still fighting - but it comes at a great cost, literally and figuratively. I am now totally paralyzed, on a ventilator and have a tracheostomy. 

For the past few years, I have asked my mom to write this appeal but I figured it was about time you heard from me. I am approaching the 14th “anniversary” of my ALS diagnosis, outliving all the naysayers who gave me 3-5 years to live. I have often said our family could be the next Netflix series – drama, tragedy, comedy, disaster, triumph, anger – we’ve seen it all! Not going to lie, I hate this f@#king disease. I can’t talk, walk, eat, scream, or move. But I can cry and I have done my share of that. ALS has taken a huge toll on me and my family, emotionally, financially, and physically. 

How have I lived this long and so many others don’t? I wish I knew. I do know I would not have lived this long without enormous help. I have lost many friends over the years and haven’t always been a good friend to others. My parents who worked their whole lives never planned to spend over $225,000 per year on their 44-year-old son. My dad, who never let polio stop him, was recently diagnosed with early onset of Alzheimer’s, so we are now dealing with that as well. 

I have always been stubborn and maybe that has helped me not cave. I have Elliott, the absolute joy of my life who keeps me fighting everyday. She is smart, kind, funny and a tad sassy! With the help of my ex-wife, amazing caregivers and my family, Elliott is surrounded by a village of people who love and protect her. I’m writing this humbly asking for help. As this disease is now even affecting my ability to see and type, everything also costs more. My care team is more highly skilled and needs to be compensated as such (despite what Medicaid says). I have a chance to try a new type of eyewear that may help my ability to communicate ($2500). My tablet and software are in need of an overhaul. Out of pocket expenses continue to rise and we have no idea what is going to happen with Medicaid in the near future. 

Many of you have been with me in Florida, Arizona, New York or Chicago and those have all been a part of my story I will always remember. I am grateful to you all. Whatever you can do to help is so appreciated. Thank you for being there for me and my family. 

Kev