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Roman (7) and Stella (6) are siblings living with ASMD Type A/B, a rare and terminal genetic disease.
As their condition has progressed, they have lost the ability to speak, walk, and eat by mouth—but they continue to show us joy, connection, and love in ways that are impossible to put into words.
We are fighting for their lives in every way we can—supporting every aspect of their daily care, accessing life-extending treatments that have improved their quality of life, and working toward research that could change their future and the future of children like them.
Our Story:
From the moment Roman was born, he filled our world with light. His laughter, curiosity, and sweet blue-eyed gaze could soften even the hardest day.
At just eight months old, our lives changed forever when he was diagnosed with ASMD Type A/B—a rare, terminal genetic disease often compared to “baby Alzheimer’s.”
Just three days before receiving Roman's diagnosis, we learned we were expecting our daughter, Stella. We later discovered that any child we have together has a 25% chance of inheriting this condition. We had Stella tested at birth, and our worst fears were confirmed. She too fell into those 25% odds and was diagnosed with ASMD.
In an instant, we went from blissful first-time parents to fighting for two children at once.
Fighting for Time, Fighting for Progress:
Since their diagnosis', we have fought relentlessly to access every available treatment option.
Roman and Stella have both been receiving a bi-weekly enzyme replacement therapy, and they are part of an investigational treatment program using a small molecule drug aimed at slowing neurological progression. Roman is the first child in the world to receive both therapies simultaneously, and Stella began shortly after him.
These treatments have given us something we NEVER take for granted: more time.
But ASMD is relentless, and current treatments do not cross the blood-brain barrier. That means our children still need a third and final treatment—one that can protect their neurological function if we are going to change the course of this disease.
That research exists only because of limited funding and families like ours advocating for it.
Why We Are Fundraising Now:
This GoFundMe originally began in 2021 with a focus on funding research and fast tracking treatments for ASMD through Wylder Nation Foundation. That mission is still deeply important to us, and we remain committed to supporting a cure. However, as our journey has evolved, so have our most urgent needs. As Stella’s condition progressed, we made the difficult decision for me (Jillian) to step away from my career so I could become a full-time caregiver and advocate for our children. Our family transitioned from a two-income household to a single income, while the cost and complexity of their care has only increased. Right now, your support helps us provide:
- Specialized medical care and therapies
- Home modifications to keep our environment safe and accessible as they continue to grow
- Adaptive equipment & medical care not covered by insurance as Roman and Stella's needs continue to change
- And something equally important to us: the ability to create meaningful memories together while we have time
Because in between hospital visits, therapies, and intense caregiving, we are also just a family trying to live fully with the time we are given.
Making Memories While We Have Time:
This summer, for Donald’s 40th birthday, we are hoping to take Roman and Stella to see one of the world's most beautiful natural wonders, Niagara Falls and travel out of the country (Canada) for the first time as a family.
For most families, this might feel like a simple trip. For us, it requires extensive planning, equipment, nursing support, and financial resources to make it possible.
But these moments matter deeply to us.
Our children deserve experiences beyond medical rooms and diagnoses. They deserve wind in their faces, new experiences, and the joy of simply being together as a family.
The Urgency:
ASMD is relentless. It does not pause. It does not wait.
Every day matters for Roman and Stella—not just for their medical care, but for their quality of life, their comfort, and their joy.
By supporting our family, you are helping us fight on both fronts:
- For treatments that will extend and improve their lives
- And for the everyday moments that make those lives meaningful right now
How You Can Help Today:
If you feel moved to support Roman and Stella, there are several ways to help:
- Donate—no amount is too small
- Share our story to help others learn about ASMD
- Follow our journey on social media
With Deep Gratitude:
We do not take a single message, prayer, donation, or act of kindness for granted. You have carried us through the hardest parts of this journey, and we are endlessly grateful for each and every one of you.
With love,
Jillian and Donald Arnold
Roman & 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.
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