*UPDATE: De is still fighting this incredible fight for his life. While becoming weaker, he continues to literally drag himself to work and to his kids events. He lives for his kids and wants to be a part of anything and everything he can.

The yearly cost of this horrible disease is astronomical. His insurance only pays for some, the rest comes out of his pocket. He has had to remodel his bathroom to accommodate his needs from a wheelchair and shower accessibility. He also has had to buy a larger car that could hold the equipment he needs just to get around. He still needs to have hand controls installed on the car, which is very costly and insurance does not pay for. Recently, he had to purchase another powered wheelchair to be able to have one at home and at his office…as well as a floor lift for when he falls, to get him back to wheelchair height! The ALS association has helped as much as they are permitted to but the rest is on him. Can you please find it in your heart to help out my dear friend?

Hi, my name is MaryBeth and I am fundraising for my friend, De Maxwell.

It is with great sadness that I am creating this account. My high school friend, De, has been diagnosed with ALS. 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. For those of you that know De, you know how athletic his life has been.

ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need.

De has three amazing kids, Courtney (28), Jacob (14) and Nicholas (12). Most of his time is spent with them and their activities.

De’s words:

*I first noticed something was wrong about Aug 2021 – Was coaching youth football. Quarterback and Running Backs coach. Went to hand the ball off the running back (to of all people, my son Nick!)….I couldn’t pick my legs up to run, I had no strength in them, and just fell flat on my face!

*Went through the rest of the year (2021) and into the new year (2022). On March 17, 2022 I was at a gas station, and was going to get into my car when my legs gave out and I fell hard to the pavement. I ended up driving myself to the emergency room, where they performed a number of tests and recommended seeing my doctor for further follow up. I fell a few times after this as well. Once in my garage where I was certain that I had broken my hip and elbow. Luckily, I did not. At this point, the feeling in my feet had gone away, which caused a lot of my falling.

*In April of 2022, I finally went to see my primary care doctor at the Cleveland Clinic. I had thought the issue was my back, as I always have back pain. My doctor scheduled an MRI.

The findings in the MRI were negative for any type of stenosis or narrowing of the spinal canal. Went back to see doc in May 2022, after more falls and more pain. This time he advised me to see a neurologist.

*Didn’t get into Neuro until Oct 2022. After consulting the doctor, he recommended an EMG test, because of the severe weakness in my legs.

*Had numerous testings done from Oct ’22 to June ’23 – Including: Genetic testing, 2 EMG tests – head to toe, Spinal puncture, multiple blood tests, complete MRI’s from brain to lower back with and without contrast, Surgery removing a nerve and sections of muscle to biopsy.

*Final diagnosis of ALS was given to me on July 18, 2023. My daughter was with me. I was seen by a whole panel of doctors that specialize in ALS patients. They want me to start getting fitted for a specialized/personalized motorized wheelchair. This will be extremely expensive and not sure insurance covers all of it (approx. $30k). It was also recommended that I do not drive any longer, however, if I have to I have to look into converting my brake and gas pedal to hand controls instead of feet. This is very expensive too.

*There will be numerous things that I and anyone that cares for me, needs. That is why they call this the “bankruptcy disease”!