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In this solo stream-of-consciousness episode, I’m catching you up on everything happening in our world lately—from the latest updates on Roman and Stella’s treatment journey, to exciting news about my book Soaring Together, to some personal reflections on life, advocacy, and motherhood.

You'll hear about where we are with the investigational brain medication, some hopeful signs we've been seeing, our upcoming family trips, and a big (and bittersweet) decision we’re considering for next year: sending the kids to an in-person school for children with disabilities. I’m sharing all the emotions that come with these changes—hope, nervousness, gratitude—and what it means to show up for life, even when it’s complicated.

If you’ve been following our story or are just tuning in, this is a cozy, honest, and real-life update from our little corner of the rare disease world.

In This Episode:

• Updates on the kids’ investigational drug protocol
• The next step in their ASMD treatment journey
• Stella's FIRST dance recital
• Soaring Together now available at the Cincinnati Zoo Gift Shop!
• Why we’re considering in person school for Roman and Stella next year
• Upcoming travel plans (and why these trips are extra meaningful)
• The power of making memories—big and small

*Special shout out to @abbeybenj for inspiring me to get Stella into a dance class!

Thank you for being here and for walking this road with us. 💛

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us!
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
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