Support Jacob's Mom in Her Fight Against ALS
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Help My Mom Fight Bulbar Onset ALS
Hi, my name is Jacob, and I am reaching out with the heaviest heart I’ve ever carried. On April 16th, 2025, my beautiful mother was diagnosed with Bulbar Onset ALS — a cruel, aggressive form of Amyotrophic Lateral Sclerosis that begins by attacking the muscles responsible for speech, swallowing, and eventually breathing.
I am her only son, her next-of-kin, and her Power of Attorney. She has no husband or partner — I am her primary (and only) caregiver. The road ahead of us is daunting, heartbreaking, and rapidly changing. We are facing the unimaginable, and I am asking for help — both financial and practical — from anyone who is willing and able to walk alongside us during this journey.
My mom is facing one of the most devastating diagnoses possible, and she is doing it with grace, courage, and a quiet strength in the Lord.
What Is Bulbar Onset ALS?
Bulbar Onset ALS is a particularly aggressive form of ALS, which starts by attacking the bulbar region of the brain — the part responsible for vital functions like speech, chewing, swallowing, and breathing. Unlike the more common limb-onset ALS, Bulbar Onset affects the throat and facial muscles first, which means:
- Speech quickly deteriorates, leading to total loss of the ability to talk.
- Swallowing becomes dangerous, increasing the risk of choking or aspiration pneumonia.
- Breathing becomes labored, eventually requiring ventilatory support.
It’s not just a loss of strength — it’s a loss of voice, of communication, of dignity in daily life. And it progresses rapidly. Eventually, the disease spreads to the limbs, leading to full-body paralysis while cognitive function often remains painfully intact.
What This Means for Us-
The emotional toll is unimaginable, but the financial and logistical burdens are just as overwhelming. As her only child and sole caregiver, I am now responsible for everything — navigating the healthcare system, managing appointments, coordinating caregiving, maintaining our home, and emotionally supporting my beautiful mother.
We are anticipating and already facing:
- Loss of income — my mom can no longer work.
- Medical equipment — feeding tubes, communication devices (like eye-tracking tablets), mobility aids, breathing machines, etc.
- Home modifications — we may need ramps, a hospital bed, stair lifts, and bathroom remodels to make daily life even possible.
- In-home caregiving — ALS demands 24/7 care, and I cannot do it all on my own.
- Transportation costs — frequent hospital visits, neurology appointments, speech and respiratory therapy, etc.
- Legal and end-of-life planning — including advanced directives, wills, attorney meetings, and advocacy.
This disease doesn’t just rob people of their physical function — it drains every part of life: emotionally, financially, and spiritually.
Why We Need Your Help-
ALS is an incredibly expensive diagnosis be given. Every dollar donated will go directly toward her care, comfort, and dignity. It will help us cover:
- Medical bills and supplies
- Specialized caregiving services
- Home health modifications
- Transportation and accessible mobility
- Adaptive communication technology
- Emergency needs as the disease progresses
Even small donations add up — they give us breathing room, they buy time, and they remind us that we are not alone.
If you can’t give financially, your support is still so deeply appreciated. Sharing this campaign, offering caregiving help, delivering a meal, sending your prayers, or simply sending words of encouragement all make a huge difference.
A Final Word from a Son-
I never imagined I’d be writing this. This is not what anyone expects or plans for in their life, but we yet we find ourselves in this boat. I want my mom to know she is not alone. I want her to feel dignity in the face of a disease that tries to steal it.
If you can help us do that — in any way — I will be forever, humbly, and deeply grateful.
With love and hope,
Jacob
Organizer
Jacob Miller
Organizer
Beaverton, OR