- E
- A
Roman (7) and Stella (6) are siblings battling a rare and terminal genetic disease.
As their condition has progressed, they’ve lost their ability to speak, walk, and eat by mouth—but they continue to show us joy, resilience, and connection in ways that are impossible to put into words.
We are fighting for their lives—supporting their care today while urgently working to fund the research that could save them tomorrow.
Our Story:
From the moment Roman was born, he filled our world with light. His laughter, curiosity, and sweet blue-eyed gaze could melt even the hardest day. But at eight months, our lives were turned upside down when he was diagnosed with ASMD Type A/B, a rare and terminal genetic disease that is often compared to a "baby Alzheimers."
What made this even more difficult was that we got Roman’s diagnosis just three days after we found out we were pregnant with Stella. We quickly learned that any of our offspring have a 25% chance of inheriting this condition. We had Stella tested at birth, and our hearts were shattered for a second time when she too, fell into those odds.
Watching our children lose skills, struggle to move, and endure treatments no child should face has been devastating, but we have refused to sit back. We have fought tirelessly to get them life-saving treatments, including enzyme replacement therapy and an experimental small molecule drug to slow neurological progression. Roman is the first child worldwide receiving both treatments; Stella began shortly after.
While we remain hopeful that these two drugs together may be able to provide miracles to our children's health, we know we are not done. Roman and Stella will need a third and final treatment to survive ASMD—and research funding is extremely limited because this disease is so rare. That’s why we are turning to you. Together, we can help save our children and so many other children like them.
Why Your Support Matters:
Your donations will directly impact Roman and Stella’s lives in two ways:
1. Funding Research for a Cure
Through our partnership with Wylder Nation Foundation , your support goes toward cutting-edge ASMD research, including promising therapies that may slow or stop neuro-degeneration and gene therapy efforts aimed at replacing the defective gene for a lasting treatment.
2. Meeting Roman & Stella’s Daily Needs
As Stella’s diagnosis progressed, I had to step away from my career to care for our kids full-time, reducing our household income by half while costs continue to rise. Your contributions help make our home safe and accessible as our children continue to grow—covering renovations, adaptive equipment, and tools that allow Roman and Stella to thrive right where they are. Every donation, no matter the size, helps improve their quality of life and helps bring us closer to a cure.
The Urgency:
ASMD does not wait. Every day counts. By supporting Roman and Stella, you’re not just helping two children. You’re giving hope to families around the world fighting this devastating disease.
Call to Action:
Please join us in giving Roman and Stella the life they deserve. Every donation brings us one step closer to research breakthroughs and everyday comfort, so they can live their lives to the absolute fullest of their abilities.
Please help us Save Roman and Stella!
With everlasting gratitude,
Jillian and Don Arnold
(Roman and Stella's parents)
Learn More / Follow Our Journey:
Story + updates: Save Roman and Stella website
Podcast: Confessions of a Rare Disease Mama
Instagram: @confessionsofararediseasemama
TikTok: @raremama
What exactly is ASMD?
ASMD is caused by the deficiency of a specific enzyme, acid sphingomyelinase (ASM). This enzyme is found in special compartments within cells called lysosomes and is required to metabolize a lipid called sphingomyelin. If ASM is absent or not functioning properly, sphingomyelin cannot be metabolized properly and is accumulated within the cell, eventually causing cell death and the malfunction of major organ systems. Some symptoms include:
- an enlarged liver and spleen and distended belly
- loss of muscle tone
- failure to thrive
- rapid neuro-degeneration (think baby Alzheimer’s) that leads to death typically by age three.
HOW CAN I HELP?
- Donate what you can- no amount is too small!
- Please follow us on social media: @confessionsofararediseasemama on instagram and help share our story!
OTHER WAYS TO DONATE:
If you would like to donate by check directly to Wylder Nation Foundation please make it out to:
Wylder Nation Foundation (in memo write "Save Roman and Stella")
And mail to:
Wylder Nation Foundation
8924 E. Pinnacle Peak Road G5-574
Scottsdale, Arizona 85255
OR direct to family:
Jillian Arnold
P.O. Box 21
Loveland, Ohio 45140