Eric is continuing to fight this awful disease with everything he has in him. However, each day is a struggle. Getting out of bed, putting on clothes, feeding himself, walking, and using his hands are becoming more and more difficult. He can no longer drive, write, or bathe himself. But we are so fortunate that he is still walking, speaking clearly and eating normally and we try to focus on the things he still can do.
Our daughter Peyton has brought us so much joy and she definitely gives him motivation to keep fighting. Even though Eric can’t pick her up, run around with her in the backyard, or comfort her when she’s upset, she loves sitting on “dada’s” lap to watch a show, giving him kisses before bed, and running in our bedroom at 6:30am to wake him up in the morning. It kills Eric that he can’t be the dad he always dreamed of, but he is doing a damn good job with the horrible situation he’s been given.
Since Eric’s diagnosis we have been working tirelessly to fix the broken system for ALS drugs. One goal of ours was to help create legislation that would allow patients to have wider access to experimental treatments. We are happy to announce that on December 23, 2021, the ACT for ALS was signed into law. This bill will establish an Expanded Access grant program that funds research on and provides access to promising investigational treatments to people living with ALS who are not eligible for clinical trials. This was a huge victory for the ALS community, but there is still a lot of work to be done!
All proceeds donated to The axeALS Foundation will help get ALS treatments into the bodies of patients. Another goal of Eric’s is to help firefighters and first responder families who are suffering from ALS. We are so thankful for your support and thank you for helping us #axeALS
Eric’s Most Recent Update
Eric Stevens is four years into his ALS diagnosis. Before ALS, Eric was a college and NFL fullback and weightlifter of the year at Cal Berkeley. He was an LA City firefighter and risked his life everyday to help others. Now, he needs help doing almost everything. He cannot drive, he cannot hold a pen to write, and he cannot feed or bathe himself. He cannot lift his arms above his head or get himself up off the ground or out of a chair. He can’t dress himself, clip his fingernails, or shave his face. At 33 years old, Eric has lost all his independence.
Eric is still walking short distances with some assistance but relies heavily on his power wheelchair. He is still drinking and eating softer foods, but made the decision to get a feeding tube placed in May 2023. At night Eric uses a BiPap machine to help with his breathing while he sleeps. Although his voice has slowed down and has changed quite a bit, Eric does still speak clearly. He can still sing to his two year old daughter Peyton, read her books, and teach her about animals, birds, sports and the many other things he loves.
A Message from Eric Stevens
“This system is not working for patients living with ALS today. My hope is to make ALS a more well-known disease, raise funds for promising treatments and clinical trials, and motivate people in power to make changes that allow terminally ill patients to fight for their lives.”
“ALS IS A VERY EXPENSIVE DISEASE, costing patients an estimated $300,000 a year. The majority of patients bankrupt their families with the costs, and an even larger number simply can’t afford the cost to STAY ALIVE, so they don’t. Can you imagine – having to stop BEING ALIVE because it’s too expensive?”
With the rising cost of healthcare, many families are struggling to pay for ALS treatments. If you would like to make a contribution to axeALS Foundation, click on the link below to access our PayPal.