Hi, I’m Jillian, proud mom to Roman (7) and Stella (5). Both of our children were born with a rare, life-limiting condition called ASMD Type A/B (Acid Sphingomyelinase Deficiency). It affects every part of their bodies, and as a result, they are wheelchair users, nonverbal, tube fed, and medically complex. 

Despite these challenges, Roman and Stella live joyful, meaningful lives filled with so much love. My husband and I are fully committed to giving them the absolute best quality of life we possibly can. 

When Stella was first diagnosed, continuing my career was no longer an option. Roman and Stella’s complex medical needs required someone to coordinate care, advocate, and be fully present—so I stepped into that role full time. In doing so, I worked tirelessly to research and push for two investigational treatments, one of which has since become the first FDA-approved therapy for ASMD. These treatments have not only extended and improved my children’s lives, but have also offered hope to countless families facing the same diagnosis. 

Stepping away from a second income, however, came at a cost. While my husband works tirelessly to provide for us, the financial strain is real. Between ongoing medical expenses, therapies, and the rising cost of living, saving for a larger, more accessible home has been out of reach on our own. 

In addition to caring for my kids full-time, I’ve poured my heart into creating my podcast, Confessions of a Rare Disease Mama, writing my children’s book, Soaring Together, and sharing our story online. All of this is to support other parents like me and help build a community where families navigating similar journeys feel seen, supported, and less alone. True labors of love. ❤️  

Our current home was meant to be a starter home—a place we thought we’d live in for just a few years. We never anticipated having two children with complex medical needs, and now the space is no longer sufficient to safely accommodate all their equipment, supplies, therapies, and daily activities. 

Wheelchairs, lifts, adaptive seating, therapy gear, standers, suction machines, feeding supplies (x2)… it all takes up space. As Roman and Stella grow, the need for accessibility grows with them. Right now, simple daily tasks like moving their wheelchairs through narrow hallways, storing equipment, or having space for both kids to do therapy have become overwhelming. 

We dream of creating a fully accessible space that allows Roman and Stella to move more freely, welcome their therapists comfortably, and give our whole family a peaceful, functional environment. 

One day, we also hope to grow our family through IVF, but right now, that isn’t possible until we have a larger, more accommodating home. While our wonderful family has committed to helping us as best as they can, the truth is that the costs of creating a fully accessible home for Roman and Stella far exceed what they’re able to give. That’s why we’re opening this SupportNow fundraiser—to bridge that gap and ensure our kids have what they need to thrive at home. 

We also want to share that we still have our GoFundMe, where this incredible community has already helped us raise well over $150,000 toward research for ASMD. If supporting in that way feels more meaningful to you, you are welcome to contribute there as well. Both forms of support make an incredible difference in our lives and in the fight against this disease.  

We are raising funds to help with: 

 
Why Your Support Matters

Asking for help is NOT easy—I’ve gone back and forth for months—but I know in my heart this is what our family needs. Whenever people hear about our children, they often tell me, “I wish there was something I could do to help.” This is one way you can directly impact our kids’ quality of life.

Your support means more than just extra space. It means Roman and Stella will grow up in a home where their needs are met with dignity and love. It means we can continue giving them the best life possible. It means hope for the future of our family.

From the bottom of our hearts, thank you for helping us create a safe, loving, accessible home for our children.

With endless gratitude,
Jillian, Donald, Roman & Stella


Follow our journey:
📸 Instagram: @confessionsofararediseasemama
📘 Facebook: here
🎥 TikTok: @rare_mama
🌐 Learn more: saveromanandstella.com
🎙 Jillian’s podcast & book: confessionsofararediseasemama.com

PS: We’ll be sharing exclusive updates here and on our website (subscribe at the bottom of the page!) about our kids and the changes we’re able to make to our home thanks to your generosity.

Other Ways To Donate:

Venmo: @JillianLArnold

By mail:
Jillian Arnold
PO Box 21
Loveland, Ohio 45140

Paypal: @JillianRomansky

(Please put in the notes "An accessible home for Roman and Stella)


Other Ways You Can Help

Every share, introduction, and connection brings us one step closer to giving Roman and Stella the safe, accessible home they need. 💜