As you may know, our dad, Kevin, was diagnosed with this horrific disease on July 18, 2024.  Since then, the disease has taken A LOT away from him, but not his spirit.  We are extremely fortunate to still have him with us.

However, now, over 2 years later, he has lost the use of all of his limbs, except for slight movement in his non-dominant hand to be able to control his wheelchair.  As some of you may know, he was hospitalized on June 19th with trouble breathing. After a 5 week stay in the ICU, he finally came home after a tracheostomy.  He is now on a ventilator with additional oxygen support and cannot breathe on his own. While the trach cuff is inflated, he cannot speak or eat. We are fortunate enough that we can deflate it for a little while each day to hear his voice and give him a little bite of food or water. He has to be suctioned through the tracheostomy because he cannot clear the mucus we all produce on his own. He has a PEG tube and uses it for all meals and medications.   He needs the use of either a Hoyer Lift or a Ceiling Lift to be taken in and out of bed.  He can no longer even roll over on his own, so in the middle of the night, someone needs to wake up every few hours to readjust him or auction his lungs.  He can’t be on his side for too long though, because without any muscle holding the joints together, his joints collapse on him causing immense pain.  That’s one of things few people don’t realize about this horrific disease that takes away your movement, it doesn’t take away sensations.  He feels all the pain, he feels hot, he feels cold, he gets itches that he cannot scratch on his own.

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone regardless of age, gender, nationality, or ethnicity, although it is primarily an adult-onset disease. Currently there is no known cause or cure OR real treatment!  It is 100% fatal and 1000% torture. 

Please consider supporting our efforts to raise awareness and funds to support research and provide services to those in need by donating through my fundraising page.

Please feel free to send this page to any friend or family member who might be interested in donating!

While it was our intention to participate in this walk, Kevin’s ALS doctor said he couldn’t. It would be too risky for him to be out of the house for a long period of time on the ventilator and portable oxygen. 

With love, 

Kevin, Arlene, Nicole, Steven and Matthew 

(and Goose too)