Never in a Million Years…

Hi, my name is Briana, and my mom, Marlene, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) on September 12, 2022. ALS is a devastating and progressive neurodegenerative disease that causes nerve cells to die, leading to muscle weakness, paralysis, and eventually the loss of the ability to move, speak, swallow, and breathe.

My mom’s symptoms began suddenly in early 2021. It started with small things—tripping over her own feet, changes in her voice, and difficulty swallowing. Soon came significant weight loss and countless frustrating appointments with ENT specialists who couldn’t find the cause. Finally, a neurologist performed EMG testing (which measures electrical activity in muscles) and gave us the diagnosis no family ever wants to hear: “I’m sorry to tell you this, but you have ALS.”

That moment changed everything.

Even now, more than three years later, it still feels unreal. Watching someone you love lose the ability to do the most basic things—while keeping her faith and positivity—is both heartbreaking and inspiring. My mom’s strength, grace, and faith in God continue to amaze me every single day.

But ALS doesn’t just destroy the body. It financially devastates families. The disease requires an extraordinary level of medical care, equipment, and support — most of which isn’t covered by insurance. My mom is currently in a rehab facility, covered by Medicare only for the first 100 days. After that, coverage stops. The cost then jumps to $800 per day for room, board, and ventilator care — no maximum out-of-pocket deductible, meaning there’s literally no financial ceiling. The bills will keep coming, indefinitely.

Medicaid could potentially help, but my mom doesn’t qualify. In-home care isn’t covered either, unless the patient chooses hospice — but my mom isn’t ready to give up. She still wants to live, to fight, to have more time with her family.

However, specialized in-home nursing for ALS patients on a trach and ventilator costs between $75 and $90 per hour — a completely unsustainable expense for most families.

Being my mom’s caregiver has been the hardest, most emotional journey of my life. It has drained me mentally, spiritually, and physically, but I wouldn’t trade a single moment of being there for her. Unfortunately, her condition has now progressed to the point where she requires 24-hour skilled care, something I can no longer safely provide on my own while raising my 5-year-old son and working full time.

ALS doesn’t care how hard you’ve worked, how much you’ve saved, or how much you love someone. It takes everything — piece by piece — and leaves families trying to pick up the financial and emotional pieces along the way.

Your support will help ensure my mom receives the care she deserves. Every donation, no matter the amount, helps us cover her ongoing care, medical needs, and living expenses.

From the bottom of our hearts — thank you for reading, donating, sharing, and keeping my mom, Marlene, in your prayers <3