This is the story of how our brother found out he had ALS, a heartbreaking and devastating disease:
On April 9, 2024, 13 days after his 43rd birthday, Tony was diagnosed with ALS (Amyotrophic Lateral Sclerosis), commonly known as Lou Gehrig’s disease. It is a fatal progressive neurodegenerative disease that gradually takes away your ability to move, speak, eat and eventually breathe. It cruelly paralyzes the body over time. There is no cure. The FDA approved medication only slows the progression and extends survival by a few months. Life expectancy is generally between 2 to 5 years after diagnosis. It is a devastating disease that makes time the enemy.
Tony’s symptoms began with leg cramps that continued to get worse in October of 2023 which he figured was a result of the strenuous block job he did that August/September. Then the muscle fasciculations began in December 2023. By January 2024 and no improvement, the fear of ALS being a possibility set in. By the middle of February, his left calf quit working basically overnight. He went back to the doctor and was referred to a neurologist. Which led to that dreadful day that changed the healthy life he once knew into a nightmare.
The Tony before 2024 was fearless, active, outgoing, strong physically and mentally, social, the life of any party, witty, and known for his hilarious phrases. He is a Husker Football fanatic, a die-hard New York Yankees fan and loves all things Jeep. His love for music runs deep. Who hasn’t played the ‘Who sings this song’ game with Trumble? Can you picture the hat tilt?
You could always find him singing around the house, in the car or even while mowing the lawn which was another one of his favorite things to do. A talented guy with endless abilities. Tony could create, fix or solve anything and everything. If something broke, whether it be around the house or car related, he always had or found a solution and took care of it. He spent the last 15 years working grueling hours as an engineer for BNSF Railroad, often away from home, sacrificing sleep and time with his family to provide for them. If he wasn’t working, he was with his family, working on a project at home or helping others. Above all, his world has always revolved around his wife, Mel and their kids, Mason and Emerson. They have always been his priority, his pride and joy, his heart and he has always been their rock, protector, and foundation. They are the reason he is never giving up, no matter what this diagnosis says.
As you can imagine, 2024 was a traumatic year for Tony and his family. It was supposed to be a memorable, milestone year celebrating Mason’s senior year of high school. Instead, it was bittersweet and full of doctor appointments (including a week-long stay at the Mayo Clinic in Minnesota), tests and a whole lot of fear. It should have been full of joy and savoring all the moments. So much has changed in the last 14 months since his diagnosis. His body is getting weaker every day. He has been in physical pain for over a year. He uses a walker to get around the house. He needs a wheelchair. It is hard for him to stand, he has no balance or strength in his legs or hands. He needs help opening things. It requires a lot of energy to do simple tasks like brushing his teeth, getting dressed, putting on shoes and taking a shower. His speech is slowing. Eating is becoming challenging. He is also starting to struggle with his breathing. This has created an overwhelming amount of fear, anxiety and depression for him. He rarely leaves the house unless it’s for an appointment or talks to friends. This disease is robbing him of his life, independence, strength, voice, joy and time with family and friends.
Despite all of this, Tony is not giving up. He refuses to accept the fatal outcome and is not going down without a fight. He would like to explore every possible route (clinical trials, alternative therapies, supplements, etc.) in hopes to slow down the progression and extend his life so he can have more time with his family, to watch his boys grow up, to make more memories, to be here to witness a cure for ALS. We are hanging on to hope in 2025 and beyond.
The financial burden of ALS is significant. Due to the progression of his symptoms, Tony has no longer been able to work as of October 2024. It’s not in Tony’s nature to ask for help, as he has always been the guy everyone could count on. Always there for his family, friends, even strangers – no matter what. We are humbly asking for your support in helping Tony and his family navigate life with ALS, to help ease the financial burden and to join him in this fight.
Your donations will help with:
- Medical costs/care
- Assistive equipment
- Home modifications for accessibility
- Travel to appointments in and out of state and ALS clinical trials
- Therapy, supplements, and alternative care
- Everyday expenses, now that Tony is unable to work
- Adventures and time with family (Dream trip to New York City to watch the Yankees play at Yankee Stadium)
Whether it’s a donation, a share, or a simple word of encouragement, we thank you for being a part of his journey. Your thoughts, prayers, kindness, and contributions mean the world to us. If you’d prefer to support Tony & his family directly instead of through this fundraiser, please reach out to either of his sisters, Bethany and Mo, for more information (Venmo, mailing address, etc.).
